So I won't write it all at once. Here's the skinny.....
1) Thanksgiving left me speechless. I have so much to be thankful for, most importantly a healthy family. I am so thankful Isaac is here - #1 on our list this year. I'm thankful we have two adorable, loving children. I'm thankful I have an awesome, supportive husband who doesn't think I have to do all the cooking, cleaning and laundry. Go Team Linville! I'm thankful for my parents. My parents taught me to be a good, loving person and to remember what we have and not what we don't have. To look forward and not back. They also taught me not to go through life thinking of just myself. For that, I am so grateful. I'm thankful for my brother - he's been a huge source of support for us. He's a catch (all ya single ladies). I'm thankful that in these tough times, both Lyndon and I are employed and secure. I'm so thankful for my friends....day in and day out, they have been there. Living in Maine, Florida, Washington, wherever, I can count on them. And last (but not least), I'm thankful for new friends who love us, support us and who we love and support. Life is good!
2) I turned 29! Again!
3) We have been having multiple appointments for Isaac. He was seen at Children's at the Cranio Facial Clinic which specializes in reanimation. As there is still no movement, we felt we needed to explore some options. They are going to be running a few tests on Monday that will pretty much tell us what's going on in Isaac's head as far as his nerves are concerned. He's having a BEARS hearing test, an EMG and another CT Scan. If we learn his nerve is permanently damaged, there are some options so we will be looking at these closely in the weeks/months to come. I will "try" to keep up on the blog.
4) I am on the road to being an employed Zumba instructor. I "auditioned" last week and it went well! This evening I shadowed another instructor on the stage and next week will actually teach a few songs during her class. I'm so excited - it's an exercise I completely love...so fun!
5) MERRY CHRISTMAS TO YOU AND YOURS!!!!
Wednesday, December 23, 2009
Saturday, November 21, 2009
CST
Well we tried to do the cranial sacral therapy (CST) but it didn't go too well. Isaac was pretty uncomfortable being in another new office and just wouldn't calm down. The therapist was awesome though - she said there is no rush to get him going on this and making sure he's comfortable is the most important. We stayed and chatted for about 20 minutes and then left.
We still can't get his pediatrician to write a referral for it but we're going to proceed and pay for it anyway. I'm going to keep working on it. I think it's a whole Eastern vs. Western medicine thing.
Can't believe the holidays are already upon us. Lyndon's folks are down this weekend and I'm making an early Thanksgiving tonight. Next week we are going to my cousins for the holiday and then spending the weekend in Portland. Excited about that and it's been years since we've been down there. Then....Poof....it's December. Yowzers!
We still can't get his pediatrician to write a referral for it but we're going to proceed and pay for it anyway. I'm going to keep working on it. I think it's a whole Eastern vs. Western medicine thing.
Can't believe the holidays are already upon us. Lyndon's folks are down this weekend and I'm making an early Thanksgiving tonight. Next week we are going to my cousins for the holiday and then spending the weekend in Portland. Excited about that and it's been years since we've been down there. Then....Poof....it's December. Yowzers!
Friday, November 13, 2009
What to do what to do
My mom was on her commute home over a week ago and was chitchatting with a guy whose nephew had a tumor in his neck and when it was removed, had nerve damage to his face. He went to a nerve and paralysis center in Houston and had a surgery performed that helped the damage.
Ever since that conversation, I've been investigating more and more the options we have as far as Isaac's face is concerned. See the ENT we saw at Mary Bridge said just give it a year and then you'll have what you have. However, it's so hard to just sit back and see what's going to happen. Since then, I've spoken with the craniofacial program at Children's Hospital in Seattle as well as the doctor in Houston who does nerve surgeries. We see the doctors at Children's on December 11th. What I learned from the doctor in Houston is so so interesting so I'll try to explain it as best as I can. I believe that the craniofacial program in Seattle will have similar suggestions.
He said that what he would recommend for Isaac would be to have a surgery where he would cut just in front of his ear (like a plastic surgery cut) and would go in, first would shock the nerve with like 1200 amps (I believe that's the number he used) and if his face twitches, then they would know that the movement should come back. However, if there was no movement, they would proceed to take his facial nerve and reroute it/connect it to nerve #5 which is the nerve that allows you to chew, moves your jaw up and down. The result of this surgery would be that Isaac could move his jaw in a certain way and it would enable that side of his face to smile. It would basically move that muscle for him.
The paralysis can be seen pretty drastically in a few areas of his face. He can't crinkle his forehead, his can't close his eye, he can scrunch up his nose and he can't smile. So basically he has lost the animation in that side of his face.
If we don't go for this surgery (which should be done in the next few months before the muscles in Isaac's face just die) then there is another option which would be to wait and see for a couple of years. Then if he doesn't regain the movement, they could perform a surgery that would take muscle from one of his legs, put it in his face and then do some reanimation/nerve moving. So that is how I understand it.
It's not purely cosmetic - it's also because his facial droop will affect his speech, his eating, etc.
As far as his eye is concerned, this is another huge worry because he is at risk for scratching his cornea as his eye doesn't get the tears and remains a little open (even when he sleeps) at all times. Right now we are putting drops in his eye every two hours and at night a gel (which he hates) but there's an option of putting a weight in his eye which will allow it to close and he can learn how to manage that as he grows up. I'm not sure when they would want to do such a surgery - at what age would be best, etc.
This is just some of the stuff going on in our household these days. Making lots of calls, trying to get all the information we can. I will be needing to take more time off from work in order to make these appointments. I will absolutely fly to Houston if needed but am hoping the same thing can be done in Seattle.
It's been really difficult to get Isaac's pediatrician to be open to discussing these options. I'm honestly so shocked that none of the providers we've seen have pointed us in this direction - it's had to be on our own initiative. I've requested another referral for some "energy work" called craniosacral therapy which my massage therapist thinks could be very helpful but have been turned down for that. Maybe because it's not medicinal? I think we'll be going ahead with it anyway - just because I want to try everything possible to get my son whatever care would be helpful. Here is the official description of what craniosacral therapy is:
A craniosacral therapy session involves the therapist placing their hands on the patient, which they say allows them to tune into what they call the craniosacral system.[1] The practitioner gently works with the spine and the skull and its cranial sutures, diaphragms, and fascia. In this way, the restrictions of nerve passages are said to be eased, the movement of cerebrospinal fluid through the spinal cord is said to be optimized, and misaligned bones are said to be restored to their proper position. Craniosacral therapists use the therapy to treat mental stress, neck and back pain, migraines, TMJ Syndrome, and for chronic pain conditions such as fibromyalgia.[2][3][4] Several studies have reported that there is little scientific support for major elements of the underlying theoretical model, which has not been rigorously analyzed.[5]
I figure it's worth a try!
Ever since that conversation, I've been investigating more and more the options we have as far as Isaac's face is concerned. See the ENT we saw at Mary Bridge said just give it a year and then you'll have what you have. However, it's so hard to just sit back and see what's going to happen. Since then, I've spoken with the craniofacial program at Children's Hospital in Seattle as well as the doctor in Houston who does nerve surgeries. We see the doctors at Children's on December 11th. What I learned from the doctor in Houston is so so interesting so I'll try to explain it as best as I can. I believe that the craniofacial program in Seattle will have similar suggestions.
He said that what he would recommend for Isaac would be to have a surgery where he would cut just in front of his ear (like a plastic surgery cut) and would go in, first would shock the nerve with like 1200 amps (I believe that's the number he used) and if his face twitches, then they would know that the movement should come back. However, if there was no movement, they would proceed to take his facial nerve and reroute it/connect it to nerve #5 which is the nerve that allows you to chew, moves your jaw up and down. The result of this surgery would be that Isaac could move his jaw in a certain way and it would enable that side of his face to smile. It would basically move that muscle for him.
The paralysis can be seen pretty drastically in a few areas of his face. He can't crinkle his forehead, his can't close his eye, he can scrunch up his nose and he can't smile. So basically he has lost the animation in that side of his face.
If we don't go for this surgery (which should be done in the next few months before the muscles in Isaac's face just die) then there is another option which would be to wait and see for a couple of years. Then if he doesn't regain the movement, they could perform a surgery that would take muscle from one of his legs, put it in his face and then do some reanimation/nerve moving. So that is how I understand it.
It's not purely cosmetic - it's also because his facial droop will affect his speech, his eating, etc.
As far as his eye is concerned, this is another huge worry because he is at risk for scratching his cornea as his eye doesn't get the tears and remains a little open (even when he sleeps) at all times. Right now we are putting drops in his eye every two hours and at night a gel (which he hates) but there's an option of putting a weight in his eye which will allow it to close and he can learn how to manage that as he grows up. I'm not sure when they would want to do such a surgery - at what age would be best, etc.
This is just some of the stuff going on in our household these days. Making lots of calls, trying to get all the information we can. I will be needing to take more time off from work in order to make these appointments. I will absolutely fly to Houston if needed but am hoping the same thing can be done in Seattle.
It's been really difficult to get Isaac's pediatrician to be open to discussing these options. I'm honestly so shocked that none of the providers we've seen have pointed us in this direction - it's had to be on our own initiative. I've requested another referral for some "energy work" called craniosacral therapy which my massage therapist thinks could be very helpful but have been turned down for that. Maybe because it's not medicinal? I think we'll be going ahead with it anyway - just because I want to try everything possible to get my son whatever care would be helpful. Here is the official description of what craniosacral therapy is:
A craniosacral therapy session involves the therapist placing their hands on the patient, which they say allows them to tune into what they call the craniosacral system.[1] The practitioner gently works with the spine and the skull and its cranial sutures, diaphragms, and fascia. In this way, the restrictions of nerve passages are said to be eased, the movement of cerebrospinal fluid through the spinal cord is said to be optimized, and misaligned bones are said to be restored to their proper position. Craniosacral therapists use the therapy to treat mental stress, neck and back pain, migraines, TMJ Syndrome, and for chronic pain conditions such as fibromyalgia.[2][3][4] Several studies have reported that there is little scientific support for major elements of the underlying theoretical model, which has not been rigorously analyzed.[5]
I figure it's worth a try!
Thursday, November 12, 2009
A lot to report
I really have so much to say and so much to report...I simply don't have the time lately so please stay tuned.
Sunday, November 1, 2009
Halloween Pics
Just a few from Halloween. We had a pretty mellow night - took the kids out with our friends Shaun and Cliff and their son Caden. Sydney was supergirl, Isaac was Woody and Caden was a ninja. They scored some major loot. Now if I can just stay away from it.....
Monday, October 26, 2009
They Stare
OK, it's starting to wear on me. People who stare at Isaac...trying to figure out what's wrong. I know I've done it to others just out of curiosity but now I'm on the receiving end. I want to walk up to them and just tell them what happened. So they can stop staring. But that would take a lot of time and be emotionally draining so I try to ignore it. But it gets to me. So I'm saying it to you all (just to get it off my chest)... Please don't stare at my little boy!
Saturday, October 24, 2009
Happy Birthday Lyndon
Happy 34th Birthday Lyndon!
We spent a nice evening with some friends from Olympia. Some had to cancel as the flu and bug is running rampant around here but we still had a nice time. Oddly enough, yesterday was the one year anniversary of us being back in Washington. On Lyndon's Birthday last year, we woke up in Montanta, had cupcakes in Idaho and made it to my parents by the evening. We are still so happy about being back!
Tuesday, October 13, 2009
Countdown
In two more days, I go back to work full time and Isaac goes back to daycare full time. It's overwhelming to think about. Lately, I've been so anxious when it comes to anything and everything Isaac. Like when I talk about him to friends, I feel my blood pressure rise, I talk faster, I stumble on my words because I just can't get over the fears I have yet. Maybe it's to be expected - almost like post traumatic stress but it's not a great feeling. Having the reduced hours has been great - it means that Isaac is only at daycare for about three hours before he naps and shortly after he wakes up from nap, I pick him up. Now he will be dropped off at 7 a.m. - he naps at 12:30 p.m. so that's a long stretch of play. Anyway, it's going to be like bringing him for the first time again for me I think...
Isaac had three falls last week. First he fell off a stool at my mom's house - right onto his head. We were freaked. We called the pediatrician and once we finally spoke with our doctor, were told that he would be telling us exactly what he would tell any parent of a "normal" two year old. Because Isaac's fractures were most likely healed by now. Later in the week he took a tumble down our stairs and bonked his head and on Friday he fell out of a chair at daycare...onto his head. Maybe this has helped contribute to my increased anxiousness lately. Anyhow, I finally called his pediatrician in a panic on Friday. I want another CT scan - I want to know that his fractures have healed - that falling on his head hasn't re-injured anything, etc. He said no. He doesn't feel he needs one because there are no signs that there have been any damage. To the brain or the skull. Again, he feels he's a normal two year old. So hard to grasp....even now.
Isaac had three falls last week. First he fell off a stool at my mom's house - right onto his head. We were freaked. We called the pediatrician and once we finally spoke with our doctor, were told that he would be telling us exactly what he would tell any parent of a "normal" two year old. Because Isaac's fractures were most likely healed by now. Later in the week he took a tumble down our stairs and bonked his head and on Friday he fell out of a chair at daycare...onto his head. Maybe this has helped contribute to my increased anxiousness lately. Anyhow, I finally called his pediatrician in a panic on Friday. I want another CT scan - I want to know that his fractures have healed - that falling on his head hasn't re-injured anything, etc. He said no. He doesn't feel he needs one because there are no signs that there have been any damage. To the brain or the skull. Again, he feels he's a normal two year old. So hard to grasp....even now.
Sunday, October 11, 2009
Pumpkin Patch
Conversations
So lately, this is how it goes when I'm chatting with people I've never met. We start chit chatting about kids and inevitably, what's happened to Isaac comes out and I say something along the lines of "ya, having a boy has been a real eye opener. My boy is rather adventurous and rambunctious ... in fact, we just had a very scary incident etc." Almost immediately the person says "Oh my gosh, are you Isaac's mom?". Yep, that's me. Isaac's mom and oh so proud to be!
I continue to be amazed at how many people have been following Isaac's progress and how may people have been praying and keeping our family close to their hearts. We are so touched and blessed. Thank you.
I continue to be amazed at how many people have been following Isaac's progress and how may people have been praying and keeping our family close to their hearts. We are so touched and blessed. Thank you.
Friday, October 9, 2009
All is Well
It's been some time since I've posted. Lately I just don't feel like I have anything good to say and life has been pretty busy for us again.
Isaac has been doing pretty well. His crazy pace has slowed somewhat and he is now in part time daycare. That's been going pretty well. Drop offs are hard - he clings to me until they peel him off...so hard as a mom to walk away from your crying babies! Right now I'm just back to work from 10 a.m. to 3 p.m. and that schedule has been working well. The fractures should be nice and healed by 8 weeks which is next week. I can't believe it's been so long since the accident. 8 weeks is when I'm expected to be back at work full time.
Doctor visits are still happening pretty regularly. Speech is going pretty well - she thought she detected more movement in his mouth but I really don't see it. The doctor we saw yesterday (the rehab doc) said that he's really surprised the ENT (aka Nerve Guru) didn't order some testing to see what kind of response they get from Isaac's nerves. He said he was going to look into it. He did look up the ENT's notes from our appointment back in September and read to me that the doctor does not expect that Isaac will ever see movement in that side of his face again. I have to remind myself daily to count my blessings but it's so easy to get sad about the loss.
Sydney has been doing awesome. She's such a sweet girl and it's a joy watching her transition from toddler to a little girl. Although I got my first "I don't like you mom" this morning - that was hard and a bit early for that I think!
Last weekend Lyndon and I went to the Mariners with a big group of people celebrating our friends birthday and then I spent the weekend in Edmonds. My brother is coaching pee wee football so we watched one of his team's games and then hung put with my family. It's been a long long time since we've spent time up there!
I haven't taken any new pics as I need to switch out my battery but am hoping to have some new ones this weekend!
Isaac has been doing pretty well. His crazy pace has slowed somewhat and he is now in part time daycare. That's been going pretty well. Drop offs are hard - he clings to me until they peel him off...so hard as a mom to walk away from your crying babies! Right now I'm just back to work from 10 a.m. to 3 p.m. and that schedule has been working well. The fractures should be nice and healed by 8 weeks which is next week. I can't believe it's been so long since the accident. 8 weeks is when I'm expected to be back at work full time.
Doctor visits are still happening pretty regularly. Speech is going pretty well - she thought she detected more movement in his mouth but I really don't see it. The doctor we saw yesterday (the rehab doc) said that he's really surprised the ENT (aka Nerve Guru) didn't order some testing to see what kind of response they get from Isaac's nerves. He said he was going to look into it. He did look up the ENT's notes from our appointment back in September and read to me that the doctor does not expect that Isaac will ever see movement in that side of his face again. I have to remind myself daily to count my blessings but it's so easy to get sad about the loss.
Sydney has been doing awesome. She's such a sweet girl and it's a joy watching her transition from toddler to a little girl. Although I got my first "I don't like you mom" this morning - that was hard and a bit early for that I think!
Last weekend Lyndon and I went to the Mariners with a big group of people celebrating our friends birthday and then I spent the weekend in Edmonds. My brother is coaching pee wee football so we watched one of his team's games and then hung put with my family. It's been a long long time since we've spent time up there!
I haven't taken any new pics as I need to switch out my battery but am hoping to have some new ones this weekend!
Monday, September 28, 2009
Weekend
We had a really nice, relaxing weekend at home with not too much going on. On Saturday we went to the local cider mill and it was a blast. There was cheap, delicious local produce and lots and lots of animals for the kids to pet and feed.
Later Sydney and I went to see Cloudy with a Chance of Meatballs. It was OK. There was this one part about the girl character having once been a nerd wearing her hair in a ponytail and having glasses. I look next to me and my beautiful daughter has her hair in a pony and has glasses. I hate stereotypes and name calling like that! Besides that, the movie was pretty good and Sydney didn't catch the whole nerd/glasses thing anyway. However I'm sure we may have to deal with that at some point.
Yesterday we were disappointed by the Seahawks loss.
Hope Hasselbeck is on the mend as well as Tatupu. Sydney put together her own game day outfit. What do you think?
Friday, September 25, 2009
Daycare
Just a quick note before calling it a night. Today Isaac did really well at daycare. He was a little sad when I left but through the window I could see he stopped crying quickly. When we picked him up, we were told that at nap time, Isaac got up after all the kids had laid down and went to each one of them, kissed them and said "night night", then laid down and took a nap. Isaac has been super affectionate since the accident - like he goes up to total strangers and gives them hugs. I'm not exactly sure how to handle these situations...I just apologize because although some think it's sweet, some are a bit grumpy and confused. My dad and I were talking tonight and we think that Isaac knows where he was, how far he's come and he's just grateful to be here.
Thursday, September 24, 2009
Baby Nikoletta
On Sunday I was able to spend the day with my good friend Sarah while she labored almost all day with her second baby. It was amazing and she was a rock star! Her epidural ended up taking only on one side so she was feeling a bit of pain. In one push, Nikoletta Jennifer Mollas was born. She is beautiful! 7lb. 10oz. she is perfect and they are both doing awesome. It is the first time I have been int he state for any of my friends' babies. I can't wait for the next one (Olivia!).
Back to Work
One of the reasons I haven't been blogging too much lately is that I returned to work on Tuesday. Just part time for now. The past five weeks have probably been the busiest at my work as we're gearing up for our audit starting this coming Monday. They've been pretty good about my absence but I've been feeling the pressure to return for sure. I have been waiting to return until the doctors give a thumbs up for Isaac to be back in a daycare setting. He will be starting a new daycare (the one where Sydney goes) and he has to be watched a little more closely than the other children. The concern is 1. His fractures. We need to make sure there are no hard falls. The helmet helps with that. 2. He doesn't quite have the stamina to get through a full day of playing. He is still going at max speed and so he runs out fairly quickly. The neuro psychs said he would need to start part time and work up.
So here we are. Actually Tuesday and Wednesday my mom came down and stayed with him so I could go into work. Today he goes to see his pediatrician for a follow up and his 2 year check up where I hope to get the thumbs up for him to return to daycare. If we get the thumbs up, he'll start on Friday. I'm excited our life is returning to normal!
Isaac had an ophthalmologist appointment on Monday. He pointed out that when Isaac looks to either direction he has to tilt his head. He said that this is perhaps because he has some damage to nerve #4 that controls the movement of the eye and he wants to watch him. He said it's good that Isaac is tilting his head because he's compensating for the eye issue.
Tomorrow Isaac goes to speech therapy and we'll be learning how often he'll need this therapy. The reason they want him to have this is because of his facial droop in connection to the facial nerve damage. When he talks, it sounds like half of his mouth is full of marshmallows. So they'll be working on the way he forms his words.
We are looking forward to a relaxing weekend at home.
So here we are. Actually Tuesday and Wednesday my mom came down and stayed with him so I could go into work. Today he goes to see his pediatrician for a follow up and his 2 year check up where I hope to get the thumbs up for him to return to daycare. If we get the thumbs up, he'll start on Friday. I'm excited our life is returning to normal!
Isaac had an ophthalmologist appointment on Monday. He pointed out that when Isaac looks to either direction he has to tilt his head. He said that this is perhaps because he has some damage to nerve #4 that controls the movement of the eye and he wants to watch him. He said it's good that Isaac is tilting his head because he's compensating for the eye issue.
Tomorrow Isaac goes to speech therapy and we'll be learning how often he'll need this therapy. The reason they want him to have this is because of his facial droop in connection to the facial nerve damage. When he talks, it sounds like half of his mouth is full of marshmallows. So they'll be working on the way he forms his words.
We are looking forward to a relaxing weekend at home.
Saturday, September 19, 2009
Quiet
Tonight I am at home....alone. It's eerie. We had planned on going to Oak Harbor to visit Lyndon's parents but one of my best friends is being induced in the morning. I have been far far away for all of my friends' births so I decided to stay and Lyndon took the kids...by himself. Scary! Actually he is a really great father and will be just fine. But for me...it's weird. Especially with all that has gone on, I'm not sure that I was really ready to be away from Isaac. I worry about him and the bond that we've recreated in the last 4+ weeks is very strong and although I know he'll be fine, I still worry. But I am tired, very tired....so I'm looking forward to a good night's sleep and will try to sleep through the night and forget about the rest....just for tonight.
Today we had Isaac's ENT appointment (aka the "nerve guru"). I must say I was quite disappointed. I was anticipating he would be very optimistic because of the hearing test that was done that showed he still had hearing in the ear. I thought the loss was minimal but he said it was pretty significant (no high pitch or quiet noises). So he offered no hope to us that the movement in his face would return. There are no tests they can or will do...only time will tell. And it could take up to a year. At the year mark, we have what we have. We just have to remember where we came from. This is when I should go back to my first posts because it really could be so much worse.
Our appointment on Friday was with the neurological surgeon and all is good there. His brain works perfect. It's still a little "shocked" so some behaviors are a little odd but all in all, he is who he was - which is awesome!
So tonight I will have a glass (or two) of wine, go to bed and wake up in the morning and remember just how blessed we are.
Today we had Isaac's ENT appointment (aka the "nerve guru"). I must say I was quite disappointed. I was anticipating he would be very optimistic because of the hearing test that was done that showed he still had hearing in the ear. I thought the loss was minimal but he said it was pretty significant (no high pitch or quiet noises). So he offered no hope to us that the movement in his face would return. There are no tests they can or will do...only time will tell. And it could take up to a year. At the year mark, we have what we have. We just have to remember where we came from. This is when I should go back to my first posts because it really could be so much worse.
Our appointment on Friday was with the neurological surgeon and all is good there. His brain works perfect. It's still a little "shocked" so some behaviors are a little odd but all in all, he is who he was - which is awesome!
So tonight I will have a glass (or two) of wine, go to bed and wake up in the morning and remember just how blessed we are.
Wednesday, September 16, 2009
Trucking Along
All has been well here at the Linville household. Isaac continues to amaze me with his humor and speed! He has truly been going 100 MPH lately. We had an appointment yesterday with a neurological psychiatrist. I had no idea what one of those was either until yesterday. Turns out they specialize in the developments after a head injury and focus on how the children are adjusting emotionally and behaviorally.
As I mentioned, Isaac has been going 100 MPH and although he's two and has always been on the go, at times it's been a little over the top compared to where he was before the accident (i.e. running in circles for an hour, no napping). It was reassuring to hear from the neuro psych that this is very common. Why, they don't exactly know but apparently it should subside a little at some point. In addition to the daytime energy, he's also a bear to get down and keep down at night. Like after running on high all day, by 9pm he is still not ready to crash (even after not napping)! Well this too is not uncommon and so they recommended giving him melatonin to help mellow him out at night. I am just hoping and praying that this will give us all a little more rest.
The psych also reassured me that I should not be concerned about the Fragile Child Syndrome that I mentioned in an earlier post. He needs to be watched, I should be concerned and none of that is going over the top at all. I'm so glad she said what she did because although I continued to be on his every move, felt I was obsessing. Four more weeks until we can be fairly confident that the fractures have healed but she also told me Isaac will always be a helmet child. For those Mariners fans it's like John Olerud - he suffered a brain injury and wears a helmet even in the field. Same would be for skiing, snowboarding, white water kayaking, etc. Not that I anticipate Isaac to partake in all that fun during his lifetime - but it's good to know if he wants to, he can - extra protection just would be required.
Later this week we see the neurological surgeon and on Saturday the ENT. I am really anxious about the ENT appointment. He's the nerve guru! I will surely be reporting after these visits!
The rest of our family is doing fabulous!
Thanks to all those who still follow and pray for our family!
As I mentioned, Isaac has been going 100 MPH and although he's two and has always been on the go, at times it's been a little over the top compared to where he was before the accident (i.e. running in circles for an hour, no napping). It was reassuring to hear from the neuro psych that this is very common. Why, they don't exactly know but apparently it should subside a little at some point. In addition to the daytime energy, he's also a bear to get down and keep down at night. Like after running on high all day, by 9pm he is still not ready to crash (even after not napping)! Well this too is not uncommon and so they recommended giving him melatonin to help mellow him out at night. I am just hoping and praying that this will give us all a little more rest.
The psych also reassured me that I should not be concerned about the Fragile Child Syndrome that I mentioned in an earlier post. He needs to be watched, I should be concerned and none of that is going over the top at all. I'm so glad she said what she did because although I continued to be on his every move, felt I was obsessing. Four more weeks until we can be fairly confident that the fractures have healed but she also told me Isaac will always be a helmet child. For those Mariners fans it's like John Olerud - he suffered a brain injury and wears a helmet even in the field. Same would be for skiing, snowboarding, white water kayaking, etc. Not that I anticipate Isaac to partake in all that fun during his lifetime - but it's good to know if he wants to, he can - extra protection just would be required.
Later this week we see the neurological surgeon and on Saturday the ENT. I am really anxious about the ENT appointment. He's the nerve guru! I will surely be reporting after these visits!
The rest of our family is doing fabulous!
Thanks to all those who still follow and pray for our family!
Sunday, September 13, 2009
Go Seahawks!
Our friends Tim and Olivia invited us to the opening game today. We are so excited! Go Hawks!
Wednesday, September 9, 2009
Fragile Child Syndrome
We went to see Isaac's pediatrician today as a follow-up and so he's on page with all that has happened in the last three weeks. He has been a source of support for us too while in the hospital, called to check-in and sent a stuffed animal and balloon. He was devastated by the news when he first heard as well.
The follow-up went well. The concern of keeping Isaac's head protected is what we're moving forward with here. And of course the paralysis on the left side of his face. I'm seeing it become more pronounced which is hard.
Anyway, he said one of the big concerns and what we need to be careful of is going forward as parents with Fragile Child Syndrome. I did some research and haven't actually found this to be an actual medical diagnosis but our doctor said it's similar to post traumatic stress disorder. It's just us going forward and working on not treating Isaac like every bump and bruise is the end of the world. Obviously right now we are very over protective. It's just that way. You would be too. But as the fractures heal, the need to be over protective is going to decrease and it might be hard as a parent to let that go. I totally get it and I admit that it may be hard for awhile to let it not affect how we treat Isaac. . . but we'll always try to do what's best for him. And sometimes, as the doctor pointed out, what's best for him may be different from what's best for us. Ya follow?
He recommends I stay home with Isaac for awhile longer to give him the 1:1 attention he needs right now and just take it day by day, week by week. His daycare is working with us and when we drop Sydney off in the mornings, I let him play a little with me supervising so he gets used to it. Actually a nice transition for him!
We have appointments upon appointments for a little while. Followups mostly. We still are not sure if he'll need some rehab. I think a lot depends on what happens with his face. His speech is sometimes difficult to understand. Like he's had some dental work done if that makes sense....
Nap times have been a challenge. I can't leave him alone in his room. I can't or I won't - not sure really. Obviously the best to err on the side of caution in my opinion! So we've changed out his crib and put a mattress on the floor. It's not really working. Nap times and bed times are a pain and he needs good sleep. So I just keep trying. I'm counting on we'll find what works best right before he goes back to daycare and has to acclimate again!
The follow-up went well. The concern of keeping Isaac's head protected is what we're moving forward with here. And of course the paralysis on the left side of his face. I'm seeing it become more pronounced which is hard.
Anyway, he said one of the big concerns and what we need to be careful of is going forward as parents with Fragile Child Syndrome. I did some research and haven't actually found this to be an actual medical diagnosis but our doctor said it's similar to post traumatic stress disorder. It's just us going forward and working on not treating Isaac like every bump and bruise is the end of the world. Obviously right now we are very over protective. It's just that way. You would be too. But as the fractures heal, the need to be over protective is going to decrease and it might be hard as a parent to let that go. I totally get it and I admit that it may be hard for awhile to let it not affect how we treat Isaac. . . but we'll always try to do what's best for him. And sometimes, as the doctor pointed out, what's best for him may be different from what's best for us. Ya follow?
He recommends I stay home with Isaac for awhile longer to give him the 1:1 attention he needs right now and just take it day by day, week by week. His daycare is working with us and when we drop Sydney off in the mornings, I let him play a little with me supervising so he gets used to it. Actually a nice transition for him!
We have appointments upon appointments for a little while. Followups mostly. We still are not sure if he'll need some rehab. I think a lot depends on what happens with his face. His speech is sometimes difficult to understand. Like he's had some dental work done if that makes sense....
Nap times have been a challenge. I can't leave him alone in his room. I can't or I won't - not sure really. Obviously the best to err on the side of caution in my opinion! So we've changed out his crib and put a mattress on the floor. It's not really working. Nap times and bed times are a pain and he needs good sleep. So I just keep trying. I'm counting on we'll find what works best right before he goes back to daycare and has to acclimate again!
Sunday, September 6, 2009
Home Sweet Home
It feels so good to be home!! I could absolutely care less that it's a dreary, rainy weekend. Thank goodness we aren't camping at Lake Wenatchee like were supposed to be!
Being home is perfect. We have been playing and playing and playing. Isaac wears his helmet intermittently. It should take 8 total weeks for the fractures to heal. Slowly life will return to normal. I will go back to work, Isaac will start his new daycare and we will be happy to move forward.
Friday, September 4, 2009
Homeward Bound
Thanks to all those who helped me in my "Please don't drip" chant. It worked!!! We are going home today!!!
I can't quite believe what we've gone through in the last 2 1/2 weeks and I don't think anyone thought we would be where we are now. Our child has come out of this with a small hearing loss and paralysis on the left side of his face. No inpatient rehab and possibly no outpatient rehab - at least on the PT side. He is running, jumping and dancing. Just like that. Miracles Happen is right!!! Thank God for answering our prayers!
They are looking into ordering a helmet as it will take 6 more weeks for the fractures to heal. During that time, he'll need to be closely watched. Some rehab will be needed - like speech and possibly some OT (occupational therapy).
I wish I could find my camera cords but again, I can't. I'll have to share pictures later.
I can't quite believe what we've gone through in the last 2 1/2 weeks and I don't think anyone thought we would be where we are now. Our child has come out of this with a small hearing loss and paralysis on the left side of his face. No inpatient rehab and possibly no outpatient rehab - at least on the PT side. He is running, jumping and dancing. Just like that. Miracles Happen is right!!! Thank God for answering our prayers!
They are looking into ordering a helmet as it will take 6 more weeks for the fractures to heal. During that time, he'll need to be closely watched. Some rehab will be needed - like speech and possibly some OT (occupational therapy).
I wish I could find my camera cords but again, I can't. I'll have to share pictures later.
Thursday, September 3, 2009
Uneventful Update
So now we're waiting...for the drip to stop! It's slowed WAY down - maybe 6 drips today. Tomorrow the neurological surgeon comes to evaluate and actually try to get it to drip. If it drips, we stay all weekend, if it doesn't, we go HOME!!!
Please don't drip. Please don't drip. My friends tonight brought up the idea of sticking something up there so it won't (as a joke of course).
So if it drips, we reevaluate on Monday. If it's still dripping, then they do a ct scan to figure out exactly where the drip is coming from and surgically fix it. This would be a bummer!!! Of course we just want what's best for Isaac. The concern with the leak is not really that it's leaking but that if something is leaking out, then bacteria could get in. Huge infection risk.
It has been determined that he will do outpatient rehab down in Olympia. Wahoo! Not sure what the frequency will be yet. In a way I'm scared to go home. Then his care is all up to me and he's moving a lot. I will need to be on top of his every move. Another bonk on his head would be awful. As time passes, we'll get a better idea of how long 1:1 care will be required...
Please don't drip. Please don't drip. My friends tonight brought up the idea of sticking something up there so it won't (as a joke of course).
So if it drips, we reevaluate on Monday. If it's still dripping, then they do a ct scan to figure out exactly where the drip is coming from and surgically fix it. This would be a bummer!!! Of course we just want what's best for Isaac. The concern with the leak is not really that it's leaking but that if something is leaking out, then bacteria could get in. Huge infection risk.
It has been determined that he will do outpatient rehab down in Olympia. Wahoo! Not sure what the frequency will be yet. In a way I'm scared to go home. Then his care is all up to me and he's moving a lot. I will need to be on top of his every move. Another bonk on his head would be awful. As time passes, we'll get a better idea of how long 1:1 care will be required...
Wednesday, September 2, 2009
Hearing Test Results
I was fully prepared to be told that Isaac's hearing was completely lost in his left ear but IT'S NOT!!! He has partial hearing - it's not perfect but we will take it. This is good in more ways than one. It means his hearing nerve was not severed and since the hearing nerve is in very close association with the facial nerve, means the paralysis in his face could recover. Isn't it amazing?? I am so incredibly happy!! Keeping the faith and staying positive works!!
We weren't given specific results of the cat scan yet but we do know that we have four days for this drip to stop or surgery may be required. It has slowed down quite a bit so hopefully it dries up soon!
Also, the rehab doctor came today and saw Isaac walking...yes walking - and he was amazed. I mean truly this boy is a MIRACLE!! Anyway, he said that because of his impressive progress, outpatient rehab could be all that he requires. At first I really wanted inpatient - as it would be so all-encompassing and would definitely propel him in the right direction but looking at Isaac's progress now, I'm not sure he needs it! Outpatient rehab would require a few appointments per week to work on a few issues that do still need a bit of work.
We are definitely looking forward to normality again - however it may be. I picked Sydney up at daycare this afternoon and we went to the end of the summer party, then she came up to the hospital. When I had to say goodbye to her, it was devastating. For both of us. She wants to come home and be with us - it's hard to have to tell your daughter that right now, Isaac needs us more than she does. Very hard. I keep reinforcing that this will all come to an end soon and we miss her very much but every day that goes by makes it tougher. Not quite sure how I'm going to make this up to her.
We weren't given specific results of the cat scan yet but we do know that we have four days for this drip to stop or surgery may be required. It has slowed down quite a bit so hopefully it dries up soon!
Also, the rehab doctor came today and saw Isaac walking...yes walking - and he was amazed. I mean truly this boy is a MIRACLE!! Anyway, he said that because of his impressive progress, outpatient rehab could be all that he requires. At first I really wanted inpatient - as it would be so all-encompassing and would definitely propel him in the right direction but looking at Isaac's progress now, I'm not sure he needs it! Outpatient rehab would require a few appointments per week to work on a few issues that do still need a bit of work.
We are definitely looking forward to normality again - however it may be. I picked Sydney up at daycare this afternoon and we went to the end of the summer party, then she came up to the hospital. When I had to say goodbye to her, it was devastating. For both of us. She wants to come home and be with us - it's hard to have to tell your daughter that right now, Isaac needs us more than she does. Very hard. I keep reinforcing that this will all come to an end soon and we miss her very much but every day that goes by makes it tougher. Not quite sure how I'm going to make this up to her.
Tuesday, September 1, 2009
Not Much To Report Today
No news is good news I guess! It's been a pretty slow day. I had the morning by myself (well with Isaac of course) but no dad to hang out with Isaac while I showered, got coffee, etc. so it was a bit of a challenge. Luckily, I survived!
Isaac wakes up ready to play. He sees his cars and trucks and wants to get going. PT had a good session with him, the challenge is still balance. His muscles are a little weak also - I've noticed his thighs are a little less chunky and his pants a little baggy. Not surprising after being in a coma for five days and being fed by a tube for three.
Medically he's still waiting for the CT scan but they've put that off to tomorrow so they don't have to sedate him twice. So 11am tomorrow is the hearing test and either before or after is the CT scan. Then we are counting on the move to Children's. I honestly could see them putting it off until Thursday but the pediatrician saw no reason to put it off. Time will tell...
This hospital is starting to feel very small....I really just want to go home and get back to our "normal" life.
Isaac wakes up ready to play. He sees his cars and trucks and wants to get going. PT had a good session with him, the challenge is still balance. His muscles are a little weak also - I've noticed his thighs are a little less chunky and his pants a little baggy. Not surprising after being in a coma for five days and being fed by a tube for three.
Medically he's still waiting for the CT scan but they've put that off to tomorrow so they don't have to sedate him twice. So 11am tomorrow is the hearing test and either before or after is the CT scan. Then we are counting on the move to Children's. I honestly could see them putting it off until Thursday but the pediatrician saw no reason to put it off. Time will tell...
This hospital is starting to feel very small....I really just want to go home and get back to our "normal" life.
Monday, August 31, 2009
Mary Bridge for a few more days...
They are going to do a CT scan on Isaac's face to get a better look at the facial fractures. They are guessing the fractures, leakage of spinal fluid and dipping oxygen levels are all connected. They tried to do a CT scan about an hour ago and he wouldn't stay still so they either need to do it when he's super sleepy or is sedated. We're still awaiting the hearing test on Wednesday so they may have to wait until then and kill two birds with one stone.
We aren't too happy with this news and just hope the CT scan shows some small fractures that will correct on their own. Worst case scenario would be that there is a large fracture that would need to be corrected surgically. Best case scenario is it's a small fracture that will close on it's own. I would think that a large fracture would've been visible on his original CT scan so we're staying positive!
Isaac is on a sugar high from his BD cupcakes and is playing hard!
We aren't too happy with this news and just hope the CT scan shows some small fractures that will correct on their own. Worst case scenario would be that there is a large fracture that would need to be corrected surgically. Best case scenario is it's a small fracture that will close on it's own. I would think that a large fracture would've been visible on his original CT scan so we're staying positive!
Isaac is on a sugar high from his BD cupcakes and is playing hard!
Spinal Fluid
So Isaac's nose has been pretty runny....like not normal snotty runny but watery. Well the doctor saw it and is concerned it's spinal fluid. He tested it for sugar (if it was spinal fluid, it would have sugar) and it was positive. So we are now waiting for the neurological surgeon. I'm guessing we aren't going to Children's today....
The doc made it seem like it may not even be a big deal - that fluid is leaking through one or some of the fractures and sometimes it'll come out the nose or the ears in which case it would stop when the fractures healed. Just hoping it's nothing!!!
P.S. Happy 2nd Birthday Isaac!!!
The doc made it seem like it may not even be a big deal - that fluid is leaking through one or some of the fractures and sometimes it'll come out the nose or the ears in which case it would stop when the fractures healed. Just hoping it's nothing!!!
P.S. Happy 2nd Birthday Isaac!!!
Sunday, August 30, 2009
A Few Things
This weekend has gone really well. Isaac continues to progress which is so amazing and such a blessing. It's like we've been watching the last two years of his life on fast forward. Blurry vision to focusing, learning to grasp, popping bubbles, saying some words and now crawling a bit. And yes, we get just as excited as the first time it happened!
We're still hoping to move to Children's tomorrow. The following could, however, prevent the move: 1) they don't have the space or 2) they won't take him because he still requires oxygen at night. His levels still dip into the 80s so the nurse has instructed me to get him to cough every time they start to dip. It could be a LONG night! But I will get through it.
We moved into a bigger room today because we anticipated a few more visitors than normal because TOMORROW ISAAC TURNS 2!!!! We had a little party with family and he got a few more cars, trucks, balls and Thomas goodies!
One thing that has really bothered me since we got here that I wanted to bring to everyone's attention... some babies/young kids are here and have no one with them. Meaning their parents just drop them off and leave. Don't spend the night with them, don't visit, nothing. It hit closer to home today because there is a little girl next to us....little....I would guess 9 months and she is all alone in her little crib. A few times a day a volunteer comes to hold her but other than that, she is alone. The nurse shared with me that her mother called yesterday to check on her. Can you imagine??? We don't go to the bathroom without someone else watching Isaac. I know that may be a little over the top but it's just the way we are. It's so sad. Please keep these little angels in your thoughts and prayers. If I could volunteer to be one of the holders, I would!
In anticipation of our move tomorrow, I've packed up the camera cords so although I would love to share some cute pictures from today, I can't. I hope to get a chance to blog tomorrow but with it being the BIG day - I may not be able to.
We're still hoping to move to Children's tomorrow. The following could, however, prevent the move: 1) they don't have the space or 2) they won't take him because he still requires oxygen at night. His levels still dip into the 80s so the nurse has instructed me to get him to cough every time they start to dip. It could be a LONG night! But I will get through it.
We moved into a bigger room today because we anticipated a few more visitors than normal because TOMORROW ISAAC TURNS 2!!!! We had a little party with family and he got a few more cars, trucks, balls and Thomas goodies!
One thing that has really bothered me since we got here that I wanted to bring to everyone's attention... some babies/young kids are here and have no one with them. Meaning their parents just drop them off and leave. Don't spend the night with them, don't visit, nothing. It hit closer to home today because there is a little girl next to us....little....I would guess 9 months and she is all alone in her little crib. A few times a day a volunteer comes to hold her but other than that, she is alone. The nurse shared with me that her mother called yesterday to check on her. Can you imagine??? We don't go to the bathroom without someone else watching Isaac. I know that may be a little over the top but it's just the way we are. It's so sad. Please keep these little angels in your thoughts and prayers. If I could volunteer to be one of the holders, I would!
In anticipation of our move tomorrow, I've packed up the camera cords so although I would love to share some cute pictures from today, I can't. I hope to get a chance to blog tomorrow but with it being the BIG day - I may not be able to.
Saturday, August 29, 2009
Definite Progress
Before I get into the nitty gritty of Isaac's condition and how he's progressing, I must apologize for leaving the nose picking picture as the top post for so long. I'm sure that grossed some of you out!
Isaac is doing remarkably well....all things considered. We are hearing more words, he's recognizing people, he is focusing and his attention span is becoming longer. We are still working with PT every day and they are helping with his coordination, trying to get him to follow direction and assessing his progress. He is playing with his trucks and cars a lot! We have a play mat we put on the floor of his room and try to spend a bit of time down there just having fun.
He's been eating pretty much everything in sight. On Thursday the speech therapist came to assess his swallowing. They did an x-ray while he was swallowing some barium/chocolate concoction and it was found that when he drinks water, milk, juice, he is aspirating into his lungs a little bit. The therapist said they see this often with brain injury patients and it's because their reflex isn't fast enough for the muscle (the epiglottis) to block the airway. This has resulted in him being put on a restrictive diet which includes nectar-thick liquids (yuck) and some other random restrictions. They said this will improve with time.
We are definitely seeing the effects of the nerve damage. Although it has yet to be confirmed that he is unable to hear in his left ear, we are assuming this to be the case. His facial nerve damage is very pronounced now as the left corner of his mouth sort of turns down and his right side is becoming more animated. However - I keep reminding myself this is purely cosmetic and is nothing compared to what we originally thought the long term effects may be! And truly, his half-smile is kinda cute. We have heard of situations where the nerves can rewire and reconnect, however doctors here are definitely pessimistic.
The balance nerves damage is very evident as he is unable to walk or even crawl without tipping. He actually looks like someone who's had WAY too much to drink. We are holding him up and working on this but we're pretty sure this may take some time.
It still sounds as though we will be going to Children's for rehabilitation sometime next week. The medical doctors here want to keep him here at Mary Bridge until he has his hearing test on Wednesday but the rehabilitation specialists think he's in prime learning mode and could benefit from the rehab therapy as soon as possible. There was an inpatient vs. outpatient discussion on Friday and although he's progressing, they think a good intensive treatment program would be best.
We continue to be amazed by this boy. He is truly a miracle!!
The amount of support, love and prayers we have received has been remarkable. It is humbling and we are so grateful. Thank you!
Wednesday, August 26, 2009
Mickey Mouse
Mickey Mouse.....those were the first words out of Isaac's mouth this morning. We are so encouraged by his progress today. He showed interest in playing with his trucks and cars and he even spewed a few words our direction. A little bit more of his personality was there and he is now off most medications. They did an EEG this morning that OK'd him to stop a medication that prevents seizures.
He unfortunately pulled his feeding tube out of his nose so we are awaiting a swallow test to see if he will start to eat some applesauce or pudding. He's very leery of doctors now and anything coming near his face - no big surprise there because of all the trauma his poor little head has gone through.
We realize big leaps like this may not come daily but today was awesome! The PT and OT gals were so pleased with the improvement from yesterday. We had some visitors who were also relieved to see him progressing so well.
Thank you all for your prayers and support!
Tuesday, August 25, 2009
Another Day Gone
As I posted earlier, today was a challenge. Luckily I got a great nap in during the middle of the day and am ready to face another night of laying next to my baby's hospital crib.
We didn't really learn anything new today. The hearing test has been rescheduled for September 2nd. They gave Isaac the sedation medication and he just wouldn't fall asleep. That boy needs an army of meds to slow him down. I was surprised because PT and OT really wore him out today.
Night's are hard. The nurses come in a lot to check on him. He's got a bunch of gunk in his chest that gives him a really raspy breath. It usually requires them waking him up and patting his back and chest in order to get him to cough. Once he coughs, it's good - but that takes awhile. His oxygen levels also continue to dip too low and he requires some through his nose during the night.
The radiologist was able to get the feeding tube into his small intestine but that was a very difficult procedure to watch. They had to strap him down and he screamed the whole time. Heart wrenching. I kept reminding myself that he really needs to get this nutrition. As the day wore on, it was so obvious that on top of it being an "off" day, he was tired and I think just needs some "juice". Getting some vitamins and substance back in him will hopefully give him more alertness tomorrow.
We continue to be humbled and are thankful for the support of our friends, family and even people we don't know. Our friends have put together this incredible website: http://www.friendsofisaac.net/. Please DO NOT feel obligated to donate. We truly know how tough times are right now. Prayers and emotional support are just as important to us!!
We didn't really learn anything new today. The hearing test has been rescheduled for September 2nd. They gave Isaac the sedation medication and he just wouldn't fall asleep. That boy needs an army of meds to slow him down. I was surprised because PT and OT really wore him out today.
Night's are hard. The nurses come in a lot to check on him. He's got a bunch of gunk in his chest that gives him a really raspy breath. It usually requires them waking him up and patting his back and chest in order to get him to cough. Once he coughs, it's good - but that takes awhile. His oxygen levels also continue to dip too low and he requires some through his nose during the night.
The radiologist was able to get the feeding tube into his small intestine but that was a very difficult procedure to watch. They had to strap him down and he screamed the whole time. Heart wrenching. I kept reminding myself that he really needs to get this nutrition. As the day wore on, it was so obvious that on top of it being an "off" day, he was tired and I think just needs some "juice". Getting some vitamins and substance back in him will hopefully give him more alertness tomorrow.
We continue to be humbled and are thankful for the support of our friends, family and even people we don't know. Our friends have put together this incredible website: http://www.friendsofisaac.net/. Please DO NOT feel obligated to donate. We truly know how tough times are right now. Prayers and emotional support are just as important to us!!
A Bit of a Rough Day
Good News: Isaac high-fived his dad and I this morning.
Besides that, he's been kinda out of it. Still waiting for that click, that smile, that light bulb. I've been singing to him all morning remembering how he so enjoyed singing along, clapping and dancing to music.
Today we saw a speech therapist that is working on eating. He didn't have an interest in the applesauce today like he did yesterday. They have stopped giving him formula to his nose as he keeps vomiting. He's not getting proper nutrition so they are going to push his feeding tube further down into his small intestine so he gets more. Other highlights of our day are to include Physical Therapy, Occupational Therapy, a neurologist consultation and finally a hearing test that will let us know exactly what's going on with his hearing and possibly confirm he has permanently lost the hearing in his left ear. We are praying for a miracle!!!
Besides that, he's been kinda out of it. Still waiting for that click, that smile, that light bulb. I've been singing to him all morning remembering how he so enjoyed singing along, clapping and dancing to music.
Today we saw a speech therapist that is working on eating. He didn't have an interest in the applesauce today like he did yesterday. They have stopped giving him formula to his nose as he keeps vomiting. He's not getting proper nutrition so they are going to push his feeding tube further down into his small intestine so he gets more. Other highlights of our day are to include Physical Therapy, Occupational Therapy, a neurologist consultation and finally a hearing test that will let us know exactly what's going on with his hearing and possibly confirm he has permanently lost the hearing in his left ear. We are praying for a miracle!!!
Monday, August 24, 2009
Baby Steps
Just a bit of an update! We have moved from the PICU into a regular room. Although it means he has improved, going from the one on one care to another fish in the sea has been a bit of a rough transition. I am that mom that is worrying and analyzing his condition and progress constantly. Although I'm sure most moms would be this way, I've been told by the doctors not to expect too much (which is exactly what I've been doing). Because his brain has been through major trauma, although their is no "brain damage", there is still a lot to be done as far as getting all of his functions back - if they come back.
Isaac is definitely taking steps forward. For example, his head is becoming much stronger and he's constantly trying to sit up. He also seems to be focusing more today and for longer periods - great steps! However he goes through these times when it seems like he's slipping away - not making eye contact, just kind of this blank slate and that has been nothing short of heartbreaking. The doctors reassure us this is normal when such trauma has happened to the brain and we have to set aside all recovery expectations. Easier said than done.
Meanwhile, Lyndon will have to go back to work sometime this week. He has been with his company under 90 days and has no PTO right now. It's really hard for him to think of leaving Isaac for so long every day but maybe it will be good to get his mind on something else for awhile. Who am I kidding? He's going to be miserable!!!
This has taken me forever to write. Every specialist in the world has been to see Isaac today. They are worried because he's not keeping any food (liquid through a tube in his nose) down, we've seen the neuro psych, a speech therapist and are waiting for the rehabilitation specialist. There is some talk that it could be possible they move us to another facility where he could be in an inpatient rehab program. Again, time will tell!
Update about the specialists! Before I published the post, the rehab specialist came. He said Isaac will probably be moving to an inpatient rehabilitation facility at Children's Hospital in Seattle next Monday. He will be back on Wednesday to reassess. He said patients like Isaac often benefits greatly from such care. Although Seattle is far from home and Sydney, we'll have to just figure it out! We will know more on Wednesday...
Thank you for your prayers and thoughts. Our baby needs them!!
Sunday, August 23, 2009
Sitting Up
Right now we are lucky to have an army of family helping us around the clock. My parents and brother have been staying in the room with us and we all have our shifts. Justin takes the late night shift and is usually relieved by my mom around 2am to 3am. Then I join her usually around 6am and everyone takes turns throughout the day. This morning when I joined my mom around 7am - she was helping Isaac to sit up in his bed. His head is still very wobbly but he was putting his elbows back every time we tried to lay him back down. It was amazing to see and his eyes seem to be focusing much better.
The road may be long and have a few bumps but we are moving forward.
Later today I should have my camera cords and will be able to upload some nice pictures of us holding Isaac and Sydney's reunion with her brother. She is very concerned now and wants to be with him constantly. Last night she sensed by sadness and said "It's OK mommy, the doctors are going to give Isaac some medicine and make it all better". If only.....
The road may be long and have a few bumps but we are moving forward.
Later today I should have my camera cords and will be able to upload some nice pictures of us holding Isaac and Sydney's reunion with her brother. She is very concerned now and wants to be with him constantly. Last night she sensed by sadness and said "It's OK mommy, the doctors are going to give Isaac some medicine and make it all better". If only.....
Saturday, August 22, 2009
It's not all roses
Doesn't he look better???
This afternoon it seems really hard to focus on the joy we were experiencing yesterday. The doctors allowed us to relish in the news that Isaac's MRI showed that he has no brain damage. On Tuesday we were prepared for a severely brain damaged child, if he were to live through this. What an incredible journey.
Going forward, however, we've learned our boy's brain will be "on it" just as it was but as he slowly wakes from his induced coma, it appears there is some nerve damage.
What does this mean? Well, one of the critical areas impacted by one of Isaac's fractures was at the base of his neck behind his left ear. At first glance, the doctor believed that Isaac's hearing would be completely lost in that ear. Can totally live with that - my dad doesn't have hearing in his right ear. It's really no biggie. However as he wakes today, we're seeing that pretty much the entire left side of Isaac's face has been impacted - including the way his eye dilates and contracts. Again, I need to remind myself that just five days ago, we almost lost our precious little boy. . . .
We are trying to stay positive but I would be lying if I told you that I am a ball of glee today. Things will be different than they were and the doctor told us it could be months before we know exactly how he will be going forward. Please continue to remember Isaac and our family in your thoughts and prayers.
This afternoon it seems really hard to focus on the joy we were experiencing yesterday. The doctors allowed us to relish in the news that Isaac's MRI showed that he has no brain damage. On Tuesday we were prepared for a severely brain damaged child, if he were to live through this. What an incredible journey.
Going forward, however, we've learned our boy's brain will be "on it" just as it was but as he slowly wakes from his induced coma, it appears there is some nerve damage.
What does this mean? Well, one of the critical areas impacted by one of Isaac's fractures was at the base of his neck behind his left ear. At first glance, the doctor believed that Isaac's hearing would be completely lost in that ear. Can totally live with that - my dad doesn't have hearing in his right ear. It's really no biggie. However as he wakes today, we're seeing that pretty much the entire left side of Isaac's face has been impacted - including the way his eye dilates and contracts. Again, I need to remind myself that just five days ago, we almost lost our precious little boy. . . .
We are trying to stay positive but I would be lying if I told you that I am a ball of glee today. Things will be different than they were and the doctor told us it could be months before we know exactly how he will be going forward. Please continue to remember Isaac and our family in your thoughts and prayers.
Friday, August 21, 2009
Holla!!
NO BRAIN DAMAGE!!! A little blood on the brain...will reabsorb. In the process of waking him up. More to come...
Friday Morning
*******PLEASE BE WARNED AT THE END OF THIS NOTE I HAVE POSTED A PICTURE OF ISAAC FROM YESTERDAY.....IT IS DISTURBING********
Well Isaac hasn't quite woken up yet. Last night the determination was made by the doctors to sedate him enough to let him sleep peacefully through the night. Uncle Justin took the night shift under the assumption that Isaac would be sedated enough he would be konked out. Well, not so much. Our little guy is under 4 - 5 times the normal doses of pain and anxiety medication and is still fighting to move around. What a little fighter. This is a good sign the doctors say. Extremely severe brain injured children would not have to have much pain and anxiety medication.
This morning, they took the brain bolt out of his head. When he was admitted they had drilled a hole the size of a pinkie in his little noggin in order to monitor to measure the swelling of his brain. His levels have remained at a "normal" enough level that the doctor was ready to take it out. They took it out about 9:00 a.m. and he looks so much better with one less large tube coming out of him. The hole has been stapled and should be just one more little scar on his body.
Around noon they will be doing an MRI on him. They will have to give him a paralytic again so he does not move during this. The MRI results are critical. They are going to tell us what kind of damage has been done to his brain. The doctor has prepared us for the worse - which could be major brain damage and even a condition called Diffuse axonal injury which would mean he would remain in a coma for a long amount of time. The chance of this condition is about 10%. Please pray the lasting effects are minimal!!!
We have been amazed by the amount of love, support and prayers that Isaac and we have been receiving. We are SO thankful and feel so blessed to have our friends and family by our side.
The MRI procedure will take about two hours so we are planning on heading to our house to pack some more clothes and just see where things are down there. Some dear friends, Katie and Megan, went to our house and cleaned last night so we aren't worried about walking into a home that is the chaos I normally leave it in the morning. I am a bit worried about walking by Isaac's room, seeing his things, his cars, his airplanes, his trains...I pray I get my little boy back!!! That is the scariest part right now - not knowing if he will be the same - not knowing if we need to teach him to walk again, to talk again, etc. If he will still be excited about every airplane that flies overhead, if he will say thank you every time you do anything for him.....BUT we are so thankful he is ALIVE.
Thursday, August 20, 2009
A Dose of Good News
Isaac has continued to stay pretty much the same overnight and into this morning. His levels are around a 10 and the doctors say that this is good. During the night there was a little bit of trauma when the x-ray technician accidentally knocked out the tube that was draining the air from his chest. How this happened, I don't quite understand. However luckily it ended up being OK. It is during this type of stimulation that his ICP levels will sometimes raise. The doctor said that if his levels (when they spike) stay under 20, he is happy.
So that being said, the doctor feels that Isaac is ready to start waking up. As I understand it, they will start to take his body out of it's paralyzed state and then will begin to lighten the medicines keeping him in the coma (he will still have lots of pain meds) and ultimately transition him to start breathing on his own. I am excited and nervous. During this process, if he spikes above a 20, they go back to putting him fully in a coma and paralyzed again. They definitely expect that his levels will go up and he will be moving around quite a lot. We will all be around him trying to calm him and encourage him to rest and stay still but this boy is strong and feisty!
Please pray that Isaac's ICP stays under 20 and that the transition to breathing on his own goes smoothly. This battle is still going on and as the doctor said, we still are unsure what lasting effects there could be. I have been encouraged by countless stories of similar accidents that have happy endings and am praying our story will be the same.
Even at the rate we are going, the doctors predict that Isaac will be hospitalized for at least three weeks. So many have offered to help with Sydney it is awesome. She is still pretty clueless to what has gone on and is having so much fun with sleeping over at her friends house, going to Chuck E Cheese and such I'm starting to fear she's going to be a little sad to leave! Our friends Brooke and Brian LaFave have been her second parents through this. We are so thankful to have such selfless friends that love our children as they do their own.
I will keep you posted.....
So that being said, the doctor feels that Isaac is ready to start waking up. As I understand it, they will start to take his body out of it's paralyzed state and then will begin to lighten the medicines keeping him in the coma (he will still have lots of pain meds) and ultimately transition him to start breathing on his own. I am excited and nervous. During this process, if he spikes above a 20, they go back to putting him fully in a coma and paralyzed again. They definitely expect that his levels will go up and he will be moving around quite a lot. We will all be around him trying to calm him and encourage him to rest and stay still but this boy is strong and feisty!
Please pray that Isaac's ICP stays under 20 and that the transition to breathing on his own goes smoothly. This battle is still going on and as the doctor said, we still are unsure what lasting effects there could be. I have been encouraged by countless stories of similar accidents that have happy endings and am praying our story will be the same.
Even at the rate we are going, the doctors predict that Isaac will be hospitalized for at least three weeks. So many have offered to help with Sydney it is awesome. She is still pretty clueless to what has gone on and is having so much fun with sleeping over at her friends house, going to Chuck E Cheese and such I'm starting to fear she's going to be a little sad to leave! Our friends Brooke and Brian LaFave have been her second parents through this. We are so thankful to have such selfless friends that love our children as they do their own.
I will keep you posted.....
Wednesday, August 19, 2009
Roller Coaster
Today has absolutely been a roller coaster. Earlier, we learned that Isaac has almost certainly lost his hearing in his left ear. It appears upon second look at his CT that the nerve has been ruptured by one of the fractures.
His numbers were high this morning, too high for me to be comfortable. Then early this afternoon, his numbers went down to 0 or 1 - awesome! However now it's hovering at around an 8. Occasionally the medicine wears off and he starts grabbing for the tubes. We are encouraged at his fighting spirit!
Please continue to pray that his swelling goes down, lift up the doctors that are working on him and pray the damage done is minimal.
I will try to contine to update. I am pretty much staying at his bedside and looking at the numbers fluctuate can be maddening. We SO appreciate all the love, prayers, positive energy and concern.
His numbers were high this morning, too high for me to be comfortable. Then early this afternoon, his numbers went down to 0 or 1 - awesome! However now it's hovering at around an 8. Occasionally the medicine wears off and he starts grabbing for the tubes. We are encouraged at his fighting spirit!
Please continue to pray that his swelling goes down, lift up the doctors that are working on him and pray the damage done is minimal.
I will try to contine to update. I am pretty much staying at his bedside and looking at the numbers fluctuate can be maddening. We SO appreciate all the love, prayers, positive energy and concern.
An Update
Today has been a bit of a roller coaster. Isaac's levels were up this morning - in the 13 - 14 range. Not good. However they have gone down to 10 which makes us much happier.
I snuck in a nap and that felt good. Usually when I leave for a bit, his numbers improve. Just a coincidence I'm sure.
They are trying to keep the stimulation around him down. He's been moved to a quieter room and we're trying to whisper when near him. Its so hard not to hold him. They told me that it will be at least 5 to 7 days until I get to hold my baby. That's going to be hard.
They are starting to feed him through a tube which is good.
More to come as we know more...
I snuck in a nap and that felt good. Usually when I leave for a bit, his numbers improve. Just a coincidence I'm sure.
They are trying to keep the stimulation around him down. He's been moved to a quieter room and we're trying to whisper when near him. Its so hard not to hold him. They told me that it will be at least 5 to 7 days until I get to hold my baby. That's going to be hard.
They are starting to feed him through a tube which is good.
More to come as we know more...
Lungs
Isaac contines to rest comfortably. An x-ray this morning showed that the impact caused some holes in his lung. Basically one of his lungs blew up like a balloon and it created a few holes. This has caused some air to leak and it was on top of his lungs. Because he has a ventilator breathing for him, this causes additional leakage which would cause his lungs to collapse.
They have put a tube in this chest area that is now draining this air. We are thankful they caught this ahead of time.
Currently, his ICP levels are about the same. The paralyzer started to wear off at one point and our little fiesty guy was trying to pull on his tubes. It has been confirmed by the male nurses here that he is one strong dude.
They have put a tube in this chest area that is now draining this air. We are thankful they caught this ahead of time.
Currently, his ICP levels are about the same. The paralyzer started to wear off at one point and our little fiesty guy was trying to pull on his tubes. It has been confirmed by the male nurses here that he is one strong dude.
Our Baby Boy
Yesterday, August 18th, Isaac quickly tried to scale a very large TV. He fell to the ground and the TV fell on top of him. He was rushed to the Olympia airport where they airlifted him to Mary Bridge hospital in Tacoma.
He has multiple scull fractures and his brain was very swollen when they did the first CAT scan. This isn't a good sign we are told. They have drilled a hole in his head the size of a pinkie and are monitoring the swelling through that. Swelling can happen during the first 48 hours. This time period is CRITICAL. The "ICP" level we want him to be at is a 1 - 6. We have seen those numbers but are also seeing up to 11. 11 isn't horrible but we don't want it to get higher. As I write this, he's fluctuating between a 9 & 10...sometimes 8. The doctors are "carefully" optimistic as they anticipated this to have gotten worse. However they are quick to point out that things could change momentarily for him. Long term effects are unknown right now. He could have minimal damage, or it could be severe. The doctor even said the "D" word to Lyndon and I tonight.
One of the fractures is near four nerves that run from his brain to his ear. These nerves control: two control balance, one controls the movement of the face and one controls hearing. We can not tell yeat if these have been damaged.
We are staying in some hospital owned apartments. There are two beds so my parents are staying there as well.
I honestly am numb right now. My energetic, fun-loving, adorable child has countless tubes coming out of his body. To keep stimulation to a minimum, we are supposed to not touch him too much. I just want to hold my baby. I want to crawl in bed with him and just hold him.
Please please lift Isaac up in your prayers and thoughts. We specifically need for the swelling to diminish or at least not go any higher than it already is. Also, please peay that the ear nerves have not been damaged.
Sydney is in the car of some dear friends and is pretty oblivious to all that has happened.
I will continue to update though the blog as we progress. I ask you all to hug your babies a little tighter today.
He has multiple scull fractures and his brain was very swollen when they did the first CAT scan. This isn't a good sign we are told. They have drilled a hole in his head the size of a pinkie and are monitoring the swelling through that. Swelling can happen during the first 48 hours. This time period is CRITICAL. The "ICP" level we want him to be at is a 1 - 6. We have seen those numbers but are also seeing up to 11. 11 isn't horrible but we don't want it to get higher. As I write this, he's fluctuating between a 9 & 10...sometimes 8. The doctors are "carefully" optimistic as they anticipated this to have gotten worse. However they are quick to point out that things could change momentarily for him. Long term effects are unknown right now. He could have minimal damage, or it could be severe. The doctor even said the "D" word to Lyndon and I tonight.
One of the fractures is near four nerves that run from his brain to his ear. These nerves control: two control balance, one controls the movement of the face and one controls hearing. We can not tell yeat if these have been damaged.
We are staying in some hospital owned apartments. There are two beds so my parents are staying there as well.
I honestly am numb right now. My energetic, fun-loving, adorable child has countless tubes coming out of his body. To keep stimulation to a minimum, we are supposed to not touch him too much. I just want to hold my baby. I want to crawl in bed with him and just hold him.
Please please lift Isaac up in your prayers and thoughts. We specifically need for the swelling to diminish or at least not go any higher than it already is. Also, please peay that the ear nerves have not been damaged.
Sydney is in the car of some dear friends and is pretty oblivious to all that has happened.
I will continue to update though the blog as we progress. I ask you all to hug your babies a little tighter today.
Sunday, August 16, 2009
A Fun Summer!
We have been on the go this summer. I am constantly saying we overbooked ourselves and I'm saying it again but here we are and we finally spent a weekend in our new home! So it's been really nice.
Some of things we've been up to:
Camping weekend at Ocean Shores with the Fishers
A little Seafood soiree at our house with some friends
Family gathering in Stanwood - Aunt and Uncle from NY are visiting
Some of things we've been up to:
Camping weekend at Ocean Shores with the Fishers
A little Seafood soiree at our house with some friends
Family gathering in Stanwood - Aunt and Uncle from NY are visiting
Friday, August 7, 2009
Just a Little Rant
Becuase I'm home with Sydney today (she's not feeling well), I'm gonna blog about something that annoys me. Actually a few things that annoy me. They're things I wouldn't say to most people and sorry if you hate me for it but these things piss me off.
1) When people pull up in front of retail or grocery stores and drop people off - especially when they're SLOW to get out of the car. I mean really? You can't pull down an aisle and then let someone off?
2) People who drop people off in front of stores and then pull over to the side to wait for them. Lazy lazy lazy. And rude to people who are trying to get around. Get a parking spot jackass.
3) People who drive around looking for a close parking spot. Walk people.
4) It appears anyone and everyone can get a handicap sticker. People are usually in poor physical condition because they haven't taken care of themselves. Obvious exceptions on this one and I'm not going to go into them.
5) People who take the elevator from Floor One to Floor Two. Again, obvious exceptions exist but take note - lazy lazy lazy and RUDE to those of us who have quite a few floors to get up.
6) Checkers who aren't chatty. I'm chatty, say hello, ask me how my day is going, say something interesting.
OK I'm finding that I have to think too hard now so I'll conclude this rant. Sorry if my poor attitude has impacted your day in a negative way.
Be Happy!
1) When people pull up in front of retail or grocery stores and drop people off - especially when they're SLOW to get out of the car. I mean really? You can't pull down an aisle and then let someone off?
2) People who drop people off in front of stores and then pull over to the side to wait for them. Lazy lazy lazy. And rude to people who are trying to get around. Get a parking spot jackass.
3) People who drive around looking for a close parking spot. Walk people.
4) It appears anyone and everyone can get a handicap sticker. People are usually in poor physical condition because they haven't taken care of themselves. Obvious exceptions on this one and I'm not going to go into them.
5) People who take the elevator from Floor One to Floor Two. Again, obvious exceptions exist but take note - lazy lazy lazy and RUDE to those of us who have quite a few floors to get up.
6) Checkers who aren't chatty. I'm chatty, say hello, ask me how my day is going, say something interesting.
OK I'm finding that I have to think too hard now so I'll conclude this rant. Sorry if my poor attitude has impacted your day in a negative way.
Be Happy!
Monday, July 20, 2009
Wedding fun
It seems as though it has been quite awhile since we attended a wedding. 2006 in fact! In our social circle we are in the land of babies! Lots are on #2, some on #1 - it's just our age. BUT this weekend we attended a friend's wedding in Leavenworth. Actually more my friend - from highschool and even pre highschool. Annie and I have some great (and crazy) memories and it was so wonderful to be there. Her hubby was so nice (and cute) and the venue was amazing.
It actually got Lyndon and I thinking a lot about how much we love Eastern WA and the activities there are over there. Lyndon talked quite a bit with the owner of the farm/B&B where the wedding was held and that kind of a business really interests us. So here we are dreaming again, wondering what we're going to be when we grow up...
It actually got Lyndon and I thinking a lot about how much we love Eastern WA and the activities there are over there. Lyndon talked quite a bit with the owner of the farm/B&B where the wedding was held and that kind of a business really interests us. So here we are dreaming again, wondering what we're going to be when we grow up...
Sunday, July 12, 2009
Moving, fun, pain and more!
So it's been a really eventful month for us. We have successfully gotten out of our apartment lease and have moved into a new house (new to us). We are renting it and got a stellar deal in a great neighborhood. We have four bedrooms (one extra for guests - come see us!) and the square footage is almost double to our apartment. We needed it. It has a garage for all of Lyndon's guy stuff and just tons of storage room for all the crap we can't seem to part with.
We are really settling into Olympia nicely and love the community here.
Last night Lyndon and I took advantage of the babysitting and went on a date. Had a fantastic dinner at The Loft in Downtown Edmonds (a bit spendy but worth it) and then went to see The Proposal. Great date night movie!
This morning WAS going great - I say WAS because poor Isaac had so much energy and he was running around, came into see my mom and I and took a face plant into the corner of their desk. Immediately we could tell from the sound that it was serious. Not just a bump - but a gash. It was awful. Lyndon and I were in the car on our way to the ER in 5 minutes. They saw him immediately and luckily he didn't need stitches - just some glue. He was really a rock star and it helped that I had my camera with me with all the pics of Thomas from the day before - those made him happy. So mom and I had to cancel our planned facials but it was OK. We spent a nice afternoon with the kids, made a great halibut meal and got home just in time for bed - at least for the kids.
I am so thankful for the life we are currently leading. Lyndon has a job, I have a job, we're happy with where we live, we get to see our family almost every weekend somehow someway and we have wonderful, happy children who are the apples of our eyes.
Cheers!
We are really settling into Olympia nicely and love the community here.
Yesterday we left mid-morning as we had a date with Thomas the Train! For those who don't know, he's a cartoon character that our kids just love - especially Isaac. We got tickets for a ride on Thomas and it was pretty much set up for a day of fun. We had a great time although it was so hot - but the kids did awesome!
Last night Lyndon and I took advantage of the babysitting and went on a date. Had a fantastic dinner at The Loft in Downtown Edmonds (a bit spendy but worth it) and then went to see The Proposal. Great date night movie!
This morning WAS going great - I say WAS because poor Isaac had so much energy and he was running around, came into see my mom and I and took a face plant into the corner of their desk. Immediately we could tell from the sound that it was serious. Not just a bump - but a gash. It was awful. Lyndon and I were in the car on our way to the ER in 5 minutes. They saw him immediately and luckily he didn't need stitches - just some glue. He was really a rock star and it helped that I had my camera with me with all the pics of Thomas from the day before - those made him happy. So mom and I had to cancel our planned facials but it was OK. We spent a nice afternoon with the kids, made a great halibut meal and got home just in time for bed - at least for the kids.
I am so thankful for the life we are currently leading. Lyndon has a job, I have a job, we're happy with where we live, we get to see our family almost every weekend somehow someway and we have wonderful, happy children who are the apples of our eyes.
Cheers!
Thursday, June 11, 2009
Dress-up Diva
Thursday, June 4, 2009
In a League of her Own!
Friend: "Sydney, we want you to be a part of our 'club'"
Sydney: "I have my own club, I don't want to be a part of your 'club'"
Friend: "But we want you in OUR club"
Sydney: "I don't want to be in your club!"
Friend: "We're going to throw mud balls at you"
Sydney: "I don't care"
I love her.
Sydney: "I have my own club, I don't want to be a part of your 'club'"
Friend: "But we want you in OUR club"
Sydney: "I don't want to be in your club!"
Friend: "We're going to throw mud balls at you"
Sydney: "I don't care"
I love her.
Tuesday, May 19, 2009
Ballet Lessons
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