History

Monday, June 21, 2010 10:41 PM CDT

Holy Moly! Hawk just turned 18 and is doing so well. He is looking into work and colleges and graduating High School by semester next school year! I can hardly believe my eyes as I have watched him grow and defy the odds with TSC. I love you so much Hawk you are truly my hero

Saturday, December 20, 2008 8:05 AM CST

Wow! Where has the time gone? I have not added anything new here is quite a while, a lot has happened in our lives this year but not about Hawk's health. The only new thing there was when the insurance company decided to change hid depakote to generic. He did not do well with that, lethargic, out of focus and some possible focal seizures where his lip would not stop twitching. We were able to get a "name brand only" prescription and all that has gone away. Because of this we are keeping him at his current dose despite the fact that he has been seizure free for so long, just to be safe. Hawk is doing well in school, is more active in church and is growing up so fast. Thanks to everyone for their continued thoughts and prayers.

Tuesday, January 22, 2008 11:36 AM CST

Well, we are now 11 months post op and have not seen one single seizure. We could not be happier! :) Hawk is doing well in high school. He has struggled recently with behavior problems but I am hoping that it was just the stress of the holidays and that he will settle down as we charge head on into a new year. We are all so glad to have 2007 in our rearview mirror! Make a Wish has sent us free ski passes to use this winter and I plan to take the boys to have some fun in the snow as we celebrate Hawk's one year anniversary of being seizure free. What a fantastic way to celebrate Valentines day with someone we all love so much who is healthier than he has ever been. I will try to remember to take pics so I can share them with everyone.

Hope all our friends are healthy.

Monday, December 17, 2007 8:18 AM CST

Merry Christmas everyone!!!
Hawk is doing well. He is in High School now and keeping his grades at a decent level. He is not happy with them but as long as he is trying his best then I am very proud. He was suspended last month for kicking a kid. He has so many impulse control issues and this momma is feeling like pulling her hair out lately. His neuro psyche eval came in last week with some good suggestions to help him manage his behavior and his education. I am starting to look into them already.
I am happy to report that he has not had any seizure activity since his surgery in February, not 10 months seizure free. He still takes Depakote, as well as risperdal and stratterra. We will look at maybe weaning the Depakote in August of 2008 assuming the seizure monster stays away. Dr Theille cleared him to look for a side job as well as drivers ed. He will of course have restrictions when driving that will limit him being alone in case of seizure activity especially when we wean his meds. Can I just say YIKES!!! I cannot believe he is old enough for us to even talk about him getting behind the wheel already.
Thank you for checking in on my guy and Have a very Happy New Year.

Wednesday, June 6, 2007 1:12 PM CDT

I just came from Hawk's PET where we discussed his ot issues. The OT eval did show that although he can do the activities that cross the mid line of his body he is slower than his peers at doing so. They also noted that when his eyes cross the midline they jitter a bit in the center before going on. This is not unusual for him he has always jittered his eyes even for neuroa nd eye exams. They ghave been doing brain gym activities and other things to encourage him crossing the midline. It is getting better.
As for the high school transition. His case manager for the high school was present at the meeting and will be setting upa time for Hawk to go to the high school and get a sense for it. They are doing a new program this next year where the spec ed kids will be mainstreamed but there will be a spec ed teacher in the classroom as well as the regular teacher. He will continue to be pulled out for Math and English which have always been his weaknesses. I think we have Hawk feeling a bit more confident about this, I know I do. Next year will be a challenge for me as I will be a single mom with four boys in four different schools but I think it is important for Hawk to take this step forwards. Everyone was like "WOW! what a difference there is between now and before surgery. "
IN one week, Hawk will be a 15 year old (happy Bday Hawk!) on his way to high school. Watch out world here he comes!!!

Wednesday, February 28, 2007 6:42 PM CST

Finally....some good news!!!

Okay after all the drama that has been our lives so far this year.
After facing surgery and recovery and the post op depression thathe is
going through, Hawk recieved some very good news today. A year ago I
submitted him for the make a wish foundation and he was denied because his
medical condition was stable at the time. I thought then that he was
healthy enough to enjoy a wish before we has another episode of
uncontrolled seizures. My thinking was wrong and he was denied then.
In October while Hawk was suffering from over forty seizures a day
and had lost so much of himself, I tried again. When they finally called,
Hawk was doing a bit better but we were still working very hard to
re-teach a lot of basic things. It was at that time too that we had
learned that he was a good candidate for surgery.
Today, I checked my answering machine after a couple of appointments
and there was a message from MAW that Hawk has been approved and that
the wish granters will be contacting us to set up a time to meet with
him and ask him his wish.
I wish I could show everyone the way his face lit up when I
explained that to him!!! He started throwing ideas out at me and was so
excited. It tears my eyes to think of it because not only does he deserve this
so much but this was the first time I have seen him this happy about
anything in a very long time, the first time he reacted like a "normal"
kid in what seems like forever!!! I t gave me a glimpse of what I hope
to be complete success from this surgery, what I have been hoping to see
in him for so long.

I just had to share this with every one, hope it gives you all a
smile too!!

Sunday, February 18, 2007 5:20 PM CST

WHEW!!!! It is so good to be home and to have this surgery stuff behind us finally. Hawk and I pulled in at around 3:00 this afternoon. It is nice to see the other boys and to relax a bit. Hawk is happy to be with his brothers and it has been wonderful to see him laugh. I truly thank everyone for their prayers and support this past week.Please continue to pray for his recovery. I will update when I can, this week is school vacation so I will be busy with the four boys.

Saturday, February 17, 2007 9:02 AM CST

Things are going well and Hawk and I will be heading home tomorrow morning. He does not need any physical therapy but will continue with occupational therapy after school break. He is playing fooseball with a fellow patient right now and is beginning to get his sense of humor back. Thanks for all the prayers and love....more updates when I can.

Friday, February 16, 2007 8:36 AM CST

Things are going well for our little man. He awoke this morning bright eyed and cheerful. He has eaten well today and from a med standpoint he is well enough to be discharged(according to neuro surg). Dr Theille and I both feel that since we live so far away it would be a good idea to stay the five days estimated in the beginning so it looks like we will head out Sunday morning. Ot was rough for him yesterday but Dr Theille does not feel that was due to the surgery itself but probably the swelling (worst 48 hrs post op). He is up and moving this morning, playing shrek on the x-box as I type this. We are in the game room which is amazing here.
All is well at home, the other boys finally got back to school following the valentines day snow storm that dumped a couple feet there.
I will update more as I can, thanks to everyone for their prayers and love,

Thursday, February 15, 2007 3:28 PM CST

Today has been interesting for our guy. He was running a fever this morning but that seems to be under control. They lifted his bed restrictions so he was able to walk the halls a bit and go to the game room. This brought some color back to his face and a smile to his face. He met with PT and OT this afternoon. PT is not concerned about where he is but OT is another story. She asked him what date it is and he started to cry and shake his head no. He was very frustrated with himself because he did not know. He does not remember his b-day either. This is not unexpected after the procedure he had done but it is sad to see him struggle like this. He also had a tough time doing simple tasks that crossed his center line (ie right hand touching left knee). This also frustrated him . All I can do is encourage and love him, you all can continue to pray, the real work is his now but I know that after everything else he has been through he ill conquer this too.

Thursday, February 15, 2007 11:36 AM CST

Thanks everyone for the good vibes and prayers coming our way. Hawk was finally put on the ped floor last night, I will place contact info on his web page for those who want it. He is doing akay. He is still pretty shaky, most likely a side effect of anesthesia, and also slow to respond. He did have a small seizure last night but that too was expected. My biggest concern right now is that they just took his temp and it was 100.2. Please pray that this is just a fluke and not the start of anything major!
Therapists will most likely be helping him to get out of bed and do a few things today. He says he is not in pain and very rarely takes even tylenol for it.
Thanks to my dear friends Kim L for updating everyone and to Jan and Larry who are taking such good care of the other boys for me so I do not have any worries there, especially with all these snow days. I will post more later but hope everyone is having a good day and is staying warm....

Wednesday, February 14, 2007 8:56 AM CST

Hey everyone!
Let me just start out by thanking everyone for the thoughts and
prayers that have been coming our way. We arrived in Boston on good time
Monday. Of course I got lost and we were late for our first appointment
but that is nothing new to us at all...lol. Hawk had his MEG and did
wonderful, they even tolf Dr Thielle that he did better than the adults
they test.We then went to Dr Eskandar(the surgeon)'s office and asked a
few questions like when does he have to start fasting and when do we need
to check in and where. They said no food after midnight and to check in
at 9 am (originally we were told 6 so we were glad for the extra few
hours to rest. We then went out for chinese food, Hawk's fave! We had a
wonderful evening at the room we had in the "beacon House" (a housing
complex for patients and families). Neither of us slept well and we were
wide awake and ready to go early the next morning. Hawk could stand the
wait no longer so we headed back to the hospital. We got here
an hour early and Hawk insisted in checking in so he could get it over
with so we did.
9:00 turned into 10:30 before we were told that he was actually
scheduled for 12:15. So we waited some more. Hawk went through stages of
being okay, to fear and anger and most of all hunger. At 1:15 he had still
not been called and I had to ask that they give him something for the
headache he had from not eating. They gave him tylenol and told us that
Dr Eskandar was still in surgery and we were waiting for him and the
OR. Hawk finally took a short nap and they called us. We did get to meet
another TS mom, Ruth who seems like such a nice lady. It was nice to
have that companionship, thank you, Ruth.
We sat outside the Or for a while as they finished the other surgery
and cleaned the room. Once they started cleaning the OR Hawk really
freaked out. He grabbed my arm and said he would not do it, I could not
make him, and so on. All I could do was blink back the tears and reassure
him that it was for the best. At 4:00 I finally kissed him goodbye and
went to the waiting room for what seemed an eternity. The day surgery
dept gave me a beeper , imbedded in a huge wooden blue fish that they
said I would recieve updates on as the surgery progressed, so I sat there
reading and fish watching...waiting, watching, checking if the battery
was good, fearing and hopiung all at the same time. The procedure was
supposed to take 5 hrs so I did not expect to hear anything until 9:00.
You can imagine my surprise and relief when Dr Eskandar called the
waiting room at 8:00 to tell me it was over and he had done fine.
I met Hawk in the PICU and they had a room for me to sleep in right
there on the unit. Hawk looks amazingly well, little swelling, no black
eyes. He is doing well neurologically, all motor functions and speech
are in tact as well as his memories. He is pretty doped up on morphine
and so is slow to answer and very sleepy. He ate 2 boxes of corn flakes
and a few bites of breakfast pizza this morning as well as drinking
some juice. He is an the MRI right now and we are going to be moved to a
ped floor sometime soon.
I will update more as I can. Feel free to leave messages in his
guestbook on his web site, I will be sure to read them to him as soon as I
can.
Thanks again for the prayers and love...keep them coming and Happy
Valentines Day!!

Sunday, February 11, 2007 8:55 PM CST

It is the night before we leave for Boston and all the boys are sleeping so I thought I would take the opportunity to update the page. This week has been all kinds of crazy.God has been watching out for us though and I know that prayers from special friends like you have been a tremendous help. We finally got a vehicle back on the road, a true miracle at the mechanic for sure. We leave at 7:15 in the morning and will arrive at MGH around noon. We will then have his MEG done that we could not find last time. and settle in for the night in a room provided by the hospital. at ^:00 on Tuesday mornign we will be back at MGH for the operation. My mind is a whirl of emotions as I think of it, but I know that the Lord will place the right person in my path when I need him/her. I wish I could convince the anesthetist to knock me out until it is over, but I doubt that very much so I guess I will ahve to rely on God to get me through. Hawk is very anxious, but has been enjoying the loving gifts and encouragement offered by his friends near and far. I will attempt to keep this page updated as often as possible. Your loving thoughts and prayers are greatly appreciated as we face this trying time in our lives.

Monday, January 22, 2007 6:39 PM CST

Well, it is officially less than a month before Hawk's resection surgery and we are all getting a little anxious. Hawk has been doing well dealing with it and has asked me to speak to his class at school about his TSC as well as his upcoming surgery. I have spent the afternoon getting a slideshow prepared for that. He also asked me to put him in touch with the son of a friend of mine who is his age and has already had the same surgery last year. This young man is doing very well and was so gracious to offer to be Hawk's friend thrugh all of this. It is funny how similar they both are.

As for his seizure activity, Hawk is doing better. We are only seeing a few very mild absence seizures, though there are times where I am not sure. He is getting his functioning and thinking back and is getting his social life back on track. He has a good friend at school , his size twin(they are both very petite) who has been a good help to him and I know this has been a huge part of Hawk's willingness to share what he is going through with his other classmates.

I will post again as soon as I have the final information about his surgery plans. All I know for now is that we will be leaving the 12th and surgery is scheduled for the 13th of Feb. Please pray for all of us as we face this and pray for the surgeon and his staff that they will have steady hands and be fully prepared for whatever happens in that room.

Thanks to everyone for their love and prayers. I know that God will be glorified in the testimony that will come from this newest challenge.

Monday, December 4, 2006 7:55 PM CST

Okay, I really need to vent here, so thanks for being here to vent to.
Yesterday I go to work for about an hour and a half before I get a
call from a police officer who is at my house. Something had happened to
Burt, she was pretty sketchy except to say that I neede to come home to
be with the boys as they were taking Burt to the hospital. I rush home
as the ambulance is leaving and come inside to what looks like a horror
flick, blood everywhere. Before you panic, he is okay now and was home
within two hours ( did not even know this hospital could work that
fast). He was cutting wood with a circular saw and it hit something and
jumped , knicking him on the head. The laceration was not too deep nor was
it very long but it did get an artery. The boys were horrified of
course but it was Bear's quick thinking that saved Burt's life. He called
911 despite burt not wanting him to. Needless to say Burt has a
splitting(no pun intended) headache and is on pain meds making him less than
ideal to travel with today as we drove to Boston.

Oh yeah about that...We got up at 3 this morning and left out of here
just before 4 because I had to help Burt get ready which I had not
planned on. The weather was good until we got to Mass then it started
raining and turned into snow and lots of wind. Incidently this was at the
start of rush hour. So here I am in bumper to bumper traffic, bad
weasther and running late when I of course get lost and spend the next hour
driving all over Boston trying to get Hawk to his MEG. Burt tries to be
helpful by calling the office but fails to tell me whet they are saying
and starts giving hand signals, like I can see them driving in this.
Tired, lost nd feeling like a failure of a Mom for not having Hawk there
on time, I pull over and just start to cry. After I compose myself I
call the office and it is then that I discover there was a shuttle we
could have taken from Mass General(which I have beenpast 3 times by now)
and that they do ahve enough info to do the surgery without it so
I might as well go back to MGH and wait for my appointment with the
surgeon. By this point I am really upset, I was under the impression that
I needed to get Hawk to this test before he could have surgery. So I
cry my way back to MGH and we wait for the appointment (2 hours) with
four boys and a miserable hubby

Finally we get to meet the doc who I really liked. I had my list of
questions in hand which he answered most of before I got the chance. He
says there is enough evidence to support that surgery would help Hawk
with his seizures and asks if we have been given a date yet. Of course
not so he looks and says February 13. So now we have a date, it is
further down the road than I would like because I want to get this behind us
but at least there is a date now. We are going to see if we can
schedule the pre-op testing for the 12th so we only have to go back once and
hopefully can re-schedule the MEG for then as well(this time we'll take
the shuttle)LOL!

February 13th the day before Valentines and mine and Burt's 10th
anniversary. You know who pointed that out? yep, you guessed it, our Hawk.
He is so sweet and thoughtful as soon as Dr Eskandar said the date he
looked at me and said " I don't want to ruin your anniversay". I almost
cried and now , as I type this the tears are flowing. Here is my son
who has just been told when they will do surgery on his brain and he is
worried about us, I wish there were more people like these special kids
who can be so selfless in times when they are entitled to be selfish
and needy. What a better world it would be if we could all have such love
and innocence!

Tomorrow we go to the neuro in Scarborough and catch him up to speed
with the plan and discuss Hawk's meds since he is still seizing daily.
I think I will leave my hubby home with his headache so he can rest and
send the other boys to school. They were so great today, I think they,
in their own age appropriate way, knew how important this appointment
was for helping Hawk and the best way they could support him was by
being there and being good, I was so proud of them. I even took them up to
see where their brother stays when he is in the hospital, the nurses
were all so wonderful and one even remembered all their names just from
the things we had said to her. I am so thankful to have good medical
care for my guy and that there is finally some kind of hope for him to be
better.

Well if you have read this book you deserve a break, sorry so long,
lots to say tonight. Thanks for the love and support and prayers!

Friday, November 17, 2006 11:22 AM CST

Found out today that the MEG is scheduled for 9 am on the 28th and hopefully we will be meeting Dr Eskandar (the neuro surgeon) that afternoon. Bear Wolf, Raven and Burt will be going on this trip to answer their questions and concerns about surgery. It will be a very long day as we will have to leave the house at 4:30 to get there on time and not get home until very late.Hoping that at this meeting we will find out when surgery will happen so that we can make plans around that. Everything is still up in the air and those of you who know me can just imagine how unnerving that is to me, I am one who has to have aplan of action well in advance. Well, I will update more when I can Thanks for all the love and prayers.

Thursday, October 26, 2006 1:27 PM CDT

We are in Boston. The tests are coming in very favorable for epilepsy surgery and hopefullywe will be going home after his MRI in the morning. He had a PET today and the hospital volunteers brought lost of Halloween goodies and a pizza Party for all the kids in the ped units. It was very nice to have some sense of normalcy. Hawk is doing as well as can be expected and is eager to leave tomorrow. We will be meeting the surgeon today or tomorrow and Dr Theille plans to bring him to the sugery panel. The activity is all coming from the left frontal lobe as expected. More later.

Thursday, October 19, 2006 8:06 PM CDT

Hawk has endured so much recently. He is continueing to have multiple seizures daily. He has reached grand mal state on a couple of occasions, has experienced incontinence and has had several clusters. He is either seizu=ing, sleeping, doped out of his mind on meds or crying because he hurts and is do depressed. I wonder with every breath if he will come out of the next one, if he will ever be the same sweet little boy he once was and how many ways and how many times my heart can break as I watch him endure this torment.
We are going to Boston on Tuesday the 24th for testing. We were able to get the date moved up considerably due to his status. A huge part of me wants them to find a focal point and get rid ogf this seizure monster for good but I am also so scared of what could happen if they do surgery. How come they never tell you any of this when you plan to have kids? I'll tell ya why. If they told us it was possible to love, worry and hurt so much we would never even consider having children, that's why. Don't get me wrong, I just don't think there isever any way to prepare for the emotional turmoil of watching your child suffer.
Please Pray for all ogf us, this is really scary time right now. Pray for Hawk who is always crying to be normal, go back to school, and so on. He is so not the guy he was even a month ago.

Monday, October 16, 2006 1:42 PM CDT

39 is the number of seizures we counted saturday as we helplessly watched our son suffer through the day. We administered Diastat at about 10:00 am and that helped a little. By help I mean that he slept for about 3 hours without seizures that we noticed. As soon as he woke up though they started back in back to back to back. We called his Neuro and got the on-call at 5:00 pm when we were at 25 seizures and he said to go ahead with increasing the topamax from 50 bid to 75 bid(sorry that is twice a day) Our goal is to get to 100 bid but we were supposed to only
increase it 25 mg per dose each week and that was not due to increase
again until Tuesday evening.What ever works right?
Wrong, Sunday he had 30 seizures. I feel so helpless and hate the fact that I am at that
point again where I dread the sound of his laughter because everyone pauses to see if it is a gelastic seizure or not. He has had a full gammit of seizure types and even some new activity for him. He has a black eye and bruises from running into things, falling and so on and all the while all we can do is our best to protect him when it happens.
He is falling so far behind in school and they are so worried that they have called for a PET meating to be sure everyone who has him is fully informed of his emergency plan. We have had to keep him home Fri and I am sure again tomorrow and who knows how long before he can learn. We have his school work here but just when he can focus again he has another d@mn seizure so he has no chance to learn. He is very embarrased by these and has been very clingy today.
Today I called the neuro again and he had called in a prescription for Ativan. We just gave it to him, hopefully it will work to stop these darn seizures.We have been documenting every one we see as well as trying to get some of them on video for the sake of the doctors and hopefully to be able to find out which ones fit certain classifications(asbsence, partial, complete, etc.)
We do not go to Bostong to see Dr Theille again until his testing on Nov 6th. His neuro decided not to test because he is scheduled for it in Boston so we are just waiting and watching as our lives get turned up
side down by this disease again.
Please pray for Hawk, pray for us too, this is so draining for us as his parents but also for Bear Wolf and Raven who are on high alert letting us know everytime they suspect he will have or is having another
one.

Thursday, October 12, 2006 1:04 PM CDT

Times have been eventful here for our guy. He has been having several seizures a day and we are hearing form the school that he is having seizures there daily too. Tuesday he had his first ever cluster of seizures while at school. appearantly he went into three seizures withour coming completely around between them. I took him to the ER that eve to be sure of his blood levels but living here in no where land they have to send the tests to other labs and could only rule out the thought of illness as his platelets and blood counts were normal. We still have not heard results for his Topamax or Depakote levels.
We have comfirmed that he will be admitted to Mass General Hospital on 11-6-06 through the week for VEEG, MEG, MRI and what ever else they decide to do to see if they can find the focal point of these seizures and possibly do surgery to help.I have so much to do before that week yet at the same time i wish it were here and gone so they could help my boy. I was able to get our neuro to approve the stay in Boston without a fight this time around so insurance will be covering it and I will not have to fight for it. I can also hopefull get re-imbursed for the mileage this time around.
We had a brief but lovely visit from our TSC friends Kim and her daughter Meagan the other day. It is always so nice to have that kind of fellowship with others who truly can understand. They were headed to Boston for testing , Hope everything goes well guys!
Our home improvements are coming along nice and a dear friend of ours has blessed us with a gift of another van so Burt will have transportation when I am working or running Hawk to doctors. Hopefully we will have the money to get it on the road before Nov 6. We are also hoping to get a cell phone before hand.
I will update as soona s I can and hope that everyone has a wonderful day.

Sunday, October 1, 2006 11:22 AM CDT

After several hours in Portland yesterday at the ER, Dr Sullivan, one of Dr Rioux's partners confirmed that the rash was from the Lamictal and wants us to increase Hawk's Depakote as well as adding Topomax to the daily regimen of pills. I am of course supposed to follow up with Dr Rioux tomorrow to be sure he is good with this plan and see when he wants to see Hawk. I do not think he will be happy though because he had already told me he did not want to mess with the depakote level. Who knows.
Hawk is having several larger seizures these past couple days instead of the 1-3 smaller ones he was having. His Rash is aweful and very itchy.Poor Guy!
I am a bit concerned with sending him to school tomorrow even though he has good teachers this year who call for every thing that might remotely be TS realted.I am supposed to work al;l day tomorrow depending on what Dr Rioux says when I call him. I think I will have Burt take me to work in case he needs the van for Hawk's sake.
Well, Thanks to every one who is praying for him and please keep the prayers coming. I will update as much as I can through this. Hopefully we will be able to get to Boston for the testing they need soon.

Friday, September 29, 2006 11:24 PM CDT

Okay tonight is very stressful. I really Hate this sucks disease. Hawk is still having 1-3 seizures a day and has had a few at school lately. I do have to say KUDOS to his teaches this year especially his Special Ed teacher for keeping us informed in behavior and seizure activity this is the first time ever any of his yteachers has cared enough to make the nedded phone calls. Anyways on to why I am so upset. Yesterday I noticed some spots on Hawks face. I thought it was a lot to break out that fast(pimples) and I also thought Lamictal Rash. When he and his dad picked me up from work this evening his face was a lot worse and I could tell it was really bugging him. As soon as we got home I called his neuro's office and had the answering service try to get a hold of his neuro. Of course Dr Rioux was not on call but the guy I got was pretty good. After several phone calls and consulting with one of his colleagues it was decided to stop the Lamictal immediately and to meet them at the emergency room in Portland(2 hrs away) tomorrow mornign to see if Hawk needs steroids to get rid o this rash which has spreadto his neck, arms, hands, tummy, privates, and legs. The doc also wants to get him started on Topomax. We are concerned at this point about his seizures worsening and the rash worsening. He is only concerned about itching. Poor Guy! I really HATE that he has to go through this crap in his life, he is such a sweet little angel.

Saturday, September 16, 2006 2:20 PM CDT

Well, the school year has started and already my poor guy is having trouble. He has been having daily seizure activity and other kids have pointed and laughed at him. He is already so fragile in the ego area, this makes me very upset. I have called the school and have an appointment to address this and all the other problems of this sucks disease in his life next Thursday. I have noticed a decline in his abilities as well as even more impulsivity. We are increasing his Lamictal again and I have noticed the same eye blinking that I noticed when we first started it. Lab tests are not back yet but hopefully it will go away. We are supposed to go back to Boston soon for more testing, hopefully soon.I pray to God every day for the strength to get through and for Hawk to heal. I know he is listening and he can do all things. His ways are not our ways though so I do not know how or when, I just have to have faith that it will happen.
Bear's tests have not been significant. We sent more of Hawk's blood for testing and hopefully we can rule out TSC in Bear when we get Hawk's results.
I will post again if there are changes or when we go for testing.

Saturday, July 8, 2006 9:22 PM CDT

Man ...Oh man....has it been a long time since I updated and with good reason. We were blessed fianancially with enough money to buy a new...well an old ....house and have been in the process of working on it and getting moved in. When all is said and done everyone will have a room of their own and there will be a big yard for the boys to play in. I have been working and have taken the summer off from school due to my hectic schedule.

As for Hawk, we are still seeing several seizures a week and have seen a return of his impulsive and sometimes violent behaviors. He had recently graduated from his in home mentor and family clinician because he was doing so well. He is in counseling twice a week. He has never been able to deal well with change which is one of the reasons this house is such a blessing...we will not have to move him from home to home or school to school anymore. He is excited and glad for that but still having a hard time coping.

I have not heard anything about the testing we did on Bear so I am hoping it is all normal. Hopefully I will remember to call Dr. Theille and schedule our trip to Boston for next month. We went to the walk a thon in New Hampshire last month and donated what we could afford at the time and Bear won a certificate to a resturaunt down there so we will use that while we are there. We had a great time at the walk and I think it is helpful for Hawk to socialize with others like him.

We also recently got Hawk a new puppy. Her name is MYA and she is a Pitt Bull puppy, I will post a pic of them together as soon as I can. Mya will eventually be training to be his seizure response dog as she is very attentive to everything and has already shown an interest in him when he has one. Hopefully it will work out for him. Burt also got a puppy after having to put his dog down last month, Mya's sister Isis will be learning to help Burt with his back problems, she is very strong and will hopefully be a good fri9end for him as well.

Sunday, April 30, 2006 10:00 AM CDT

With spring fast approaching we all see the new growth around us and likewise we are seeing new things with Hawk and TSC in our home. Unfortunately, this is not as cute and cuddly as the new spring babies in our midst. Hawk has been to the neur a lot lately and has had a video EEG for 24 hours this month. We were seeing at least 3 seizures a day for weeks. We are now down to once a day to every other day with no explanation. We are afraid to increase or change his meds because he has tried and failed so many so he is still on the lamictal and depakote. The VEEG did not show anything so surgery is not an option right now. We are looking at the VNS as a possible approach to seizure control for him but will not make any decisions until after speaking with Dr. Theille in Boston this summer.It is so difficult to see him suffer from the seizures and his esteem is going downhill with every one. Please keep him in your prayers.

In other news, we have decided to have Bear checked for TSC also as we are seeing a lot of behaviors with him lately that are impulsive and worrisome. We also have noted some skin manifestations on him that have us concerned so we will be taking him through the motions of MRI, Ultra sound, and EKG testing to rule out his major organs. We paln to have this done soon so we can discuss the findings with Dr. Theille when we see her with Hawk.

Thursday, February 23, 2006 5:46 PM CST

Hello everyone! It has been a while since I updated this site so I thought I would take this opportunity to do so. Hawk is doing really well! We are transitioning some of the extra services he has had such as his counseling and mentors because he is doing so well. I am excited because this frees up my busy schedule a bit but also because it is so nice to have my son back to where he is pleased with hisself for a change. He has been on this Lamictal for a while and his behavior as well as his seizures seems to be well controlled with this med. We still see a few seizures a week but will take that over 20 a day without complaints. Hawk has joined a local jujitsu class and is doing very well in it so far. This was a reward for controlling his behavior so well and is something he has wanted for a long time, he will be getting his Gi soon and I will post a pic of him in it when I can.
School is going well for him too and he is starting to come out of his shell and have a social life. He never ceases to amaze me at what he can and does overcome in this battle for a normal life with an abnormal disease.

Sunday, January 8, 2006 9:14 AM CST

WOW!! Here it is another year already. I truly hope that everyone had a wonderful holiday season, I know we did. We have come into this new year 2006 expecting great things in our lives and in Hawk's healing. Last year you may remember we recieved the amazing news that the tumors on Hawk's kidneys are no longer present, Praise the Lord! We are hopeful for even more wonderful news this year for Hawk and all of his wonderful TS friends.
Hawk is still on the lamictal and depakote for his seizures as well as zoloft, risperdal, and straterra for his behaviors. He is doing well and has a minimal average of 1 to 2 seizures a week right now. He is also doing well in school.His grades are average but he feel he is truly doing his best and we are content with that.
On Christmas eve, he had a scary incident where he was bitten by our dog, Dakota. He ended up with a stitch in the deepest wound and a lot of bruising but is healed well now and the dog has not shown any more signs of violence. I should mention we have had Dakota now for all 15 years of his life and this is the only time he has ever acted like this(probably due to old age). Despite the pain, Hawk had a good Christmas and got his top wish, a build your own light saber kit, he is really into star wars.
That is all for now other than to wish you all a wonderful 2006 and lots of healing to all

Thursday, November 10, 2005 12:16 AM CST

Wow, this has been such a n eventful year in Hawk's TS life I hardly know where to start. Since it is November and almost time for Thanksgiving, I am happy to report that we have a lot to be thankful for. I took Hawk to visit his nephrologist last month and she said that according to the ultrasound we did on his kidneys recently, there are no lesions to report. YIPPEE!!! I felt like a kid in the candy store when she said that and we do not need to follw up with her every 6 months now, she wants to see him in a year and if all is well we will go to one visit every-other year. Also, we are weaning away the zoloft and have gotten rid of the carbitrol. He has added Lamictal as planned and is doing so well with that, that we have not seen any seizures in a couple months(knock on wood)!
Socially Hawk is doing okay. He is doing well in school and keeping up with his special ed requirements. I have him hooked up with lots of services including case management, counseling, BS1 and BS2 workers which are doing a great job of helping us to help him grow and succeed. I have had so much fun watching him return to the Hawk I know rather than the one who was so regressed from seizures and doped out on AED's.
HAPPY THANKSGIVING!!!

Sunday, July 31, 2005 9:27 PM CDT

Well, A week later and we are finally home to rest in our own beds. We did get the 3 typical seizures on the EEG that the doc wanted although only one was in front of the camera. We are done with the Keppra all together and with it the B-6 that we had to use to keep Hawk somewhat "normal". YIPPEEEEE!!! No more Keppra! I absolutely loathed that medicine and what it did to my baby.
Doc Theille wants us to ask our normal Neuro, Dr Rioux to put him on Lamictal and then wean away the depakote and Carbitrol. WOW!!A good possibility we could have seizure control with monotherapy(one med). I try not to get my hopes up, but this is exactly what I was hoping would come out of this evaluation.
Also, Doc Danforth saw him and wants to talk to his Ped about getting rid of the risperdal and the Zoloft and maybe increasing the Stratterra a little bit. GEEZ!!What more could I ask but that my child have monotherapy for his psyche problems too!!
I am swirling in my mind at the idea of just 2 meds daily versus the 7 he is on now. I hate that Hawk takes so much meds and we never know whether the seizures or behaviors are a result of a med or the TSC. I am so excited at the outcome of this past week and the hope it has given us for his future....How much better will he get along with peers, learn at school, mature into a young man....the possibilities are endless..
PRAISE THE LORD!!!

Thursday, July 28, 2005 12:46 AM CDT

God news...well if you want to call it that. At about 10:30, this morning Hawk had his first seizure. We had just spoken to Dr.Theile and her plan was to decrease the depakote again and the carbitrol. Then I sent him to the restroom to clean up and brush his teeth while the CNA changed his bed and just as he was brushing his teeth I went in to get the dirty towels and he had his seizure. One down Two to go! We are possibly looking at a few extra days of observation and hope to get enough useful infrmation to help. Hopefully we will be able to come up with an effective treatment plan for him without drugging him up too much. The decreased Keppra and stuff has made a world of difference and except for the post stictal phase today, he has been wide awake and so full of energy. He has been a bit rude and defiant, but at least he is coherant.We will wait to see the doc again this afternoon before we know for sure. He is homesick and the thought of staying in the hospital for extra time is none too appealing but like his daddy says if that is what it takes to figure things out and resolve the seizures than we can do it. The staff here are great and I have had no real complaints yet. I have had a chance to mingle with other parents and children who need afriend and have enjoyed our stay as much as anyone can enjoy being in a hospital. I will update as the occasion arises.

Wednesday, July 27, 2005 4:43 PM CDT

It is Wednesday evening, and our stay at Mass General is soon to be over. Hawk has had a rough day. He had his PET scan today, but because he did not get done until after 2:00, he thought he was gonna starve to death. He is also quitw homwsick and misses his daddy and brothers terribly. I laid in his bed with him and held him for a couple hours this morning...he was so upset.We have still not had any seizures and I am beginning to fear this trip will be in vain, but continue to hold the faith that there is still time. We have messsed a lot with his meds this week and I am concerned that he will have the seizures when we get home. This is so frustrating ...such a waiting game.

Friday, July 22, 2005 10:46 PM CDT

Well, here we are at the last Friday before we head to Boston for Hawk's pre-surge eval. I am a bit frazzled as I am trying so hard to keep it together for his sake and get everything done that needs to be done. We will be leaving here on Sunday after church an staying that night with a friend and fellow TS mom in Mass. Monday our day begins with a MRI then off to put on the electrodes and admit him to his room. We plan to bring lots of movies and batteries for his gameboy. We are really hoping that by dropping his Keppra he will have some seizures that we can get some good info off of. I will try to update as I can while we are there. Tuesday he will meet the psychiatrist and maybe we can get a diagnosis and the right meds for his behavior problems. Wednesday we do a PET scan and the rest of the week we get to kick back and relax. Please check back when you can and sign his book or give him hugs to show him how truly special he is.

Monday, June 27, 2005 8:42 AM CDT

Well, it finally happened! Hawk is now a teenager! Since he is our oldest this brings on a whole new set of challenges and due to his TSC it also means a lot of potential problems as his hormones could cause problems with his meds and his seizures. He is still having seizures, he had 2 the other night back to back and I was afraid the second one would never end. It finally did end, but it sure scared me.
He is to be admitted to Massachusettes General Hospital the week of July 25th for his pre-surgical evaluation. We will head there the day before and he and I will stay in a motel so that he can see the psychiatrists first thing Monday morning before admission. We will be doing a variety of tests including a PET scan, MRI and VEEG.Pray for seizures this week so that we can gather accurate data to help find a way to control the seizures in the future.
Hawk is terrified of this week because the word "surgery" has come up so many times lately, so pray for peace for him too.
I will update as much as possible from there or maybe ask Burt to update this page for anyone interrested in the goings on there. We plan to take a lot of movies and books and , of course his Game Boy to keep him busy . Fianances are hard right now so pray for the Lord to continue to be faithful in his provision for this trip.
On a good note , He passed all his classes despite the major set backs he endured this year and will be going on to the seventh grade next school year and we have already met with his advocate and the school to look over his neuro psyche eval and it's recommendations so that hopefully next year will not be the same uphill battle that this year was. His eval was as I expected and despite his best efforts it was painful reading.To sum it up, his full scale IQ was 80 and in the low average scale for his age placing him in the 9th e.He tested average in a few things but for the most part was below average or deficient in his efforts. It is hard as a parent to see the things you always knew were there placed in front of you in black and white. I was so happier seeing these things as just "Hawk-isms" and accepting them for who he is rather than thinking of them a deficits in his abilities.
God has given us the strength to cope so far and I have no doubt he will continue to watch over us as we face these challenges together. Thanks to everyone for the prayers and well wishes! We love you all!

Thursday, May 12, 2005 8:50 AM CDT

Well, we have the appt for his Neuro Psyche eval , It will be the 23rd of May at 11:00. We are told to expect 4 hours of intense testing and Hawk is pretty worried about it. My concerns are more about him as this kind of stress always freaks him out and he has meltdowns that almost always lead to seizures. I am trying to get caught up on bills at the moment and we are looking at 2 to 3 trips to Boston soon, so finances are tight, but we love him and will find a way. His brothers have been so understanding and supportive lately and they are such a blessing to all of us. He has been doing okay with seizures one about every other week, still not as good as it was, but better than it could be so we'll take it!

Friday, April 22, 2005 5:57 PM CDT

Well, I was right, so far no other signs of siezures.....THANK GOD!!!I have been watching him like a hawk(no pun intendeed) and other than sleeping a lot he is back to normal.I am concerned that it is taking him so long to get back on track with his rest, he is sleeping all night and taking long naps during the day. I am not complaining, but did want to note that observation. If he needs his sleep I am not going to stop him, I just hope he is back on track before school starts back up on Monday.
I was also right about Raven's black eye, or should I say eyes. He looks like a raccoon and has a bump between his eyes, a swollen nose, fat lip and in short looks like he fought Ali and survived.He is so funny running through the house with an old compact mirror I gave him showing everyone his bump. I am so amazed at the resilience of childeren and their ability to overcome such awefulness with their innocence and love.

Wednesday, April 20, 2005 5:45 PM CDT

Hawk had a sleep over at his friends house last night and did not get any sleep at all. When he came home, he was quite angry and had a big temper tantrum. he was throwing things and getting very violent so I had to restrain him. I held him and prayed over him until he fell asleep in my arms. I gently layed him down and he slept for 5 hours. I woke him for supper and his meds and he played with his brothers and did his chore. Then out of nowhere he had a siezure. I am praying this was just a sleep deprivation thing and that it is not the onset of another round of endless siezure activity for my little guy.
Also, Raven fell today while playing on his daddy's car outside and landed on the curb right on his face. He has a giant goose-egg and I will not be surprised if he has a black eye by morning. I am staying up late to watch both of them and so thankful to God that neither one is worse than he is.
It is so amazing how one small sleep deprived siezure can send me into panic mode but also refreshing to see the entire family run in unison to help a single member of the family when trouble starts. I am encouraged to know that despite their bickering my boys do love each other....but don't tell them I know!:):-)

Saturday, March 12, 2005 11:50 AM CST

Yesterday was our very first experience in Boston....big cities are so not me! We went for one reason and one reason only and that was to meet with the Tuberous sclerosis clinic at Mass general Hospital. Dr, Theile was amazing. It was so refreshing to meet a doctor with such profound knowledge and understanding of TSC and it's many facets. Our number one concern is siezure control and our second is behavior. Dr. Thiele is addressing both of these.She drew blood for the Athena test, that is where we find out if he has TSC1 or 2 depending on which gene is affected. Fron that we will be able to rule out Bear as a possible carrier and also send the info to Travis(their father) and his other three kids. We also had his usual med levels tested to be sure where they sit at now.Doctor Thiele wants to get him off of some of the meds he is taking, she feels it is a lot for a child of his intelligence and othewise good health and they are all working on his little brain. She wants us to come back to meet with her psychiatrist and hopefully help to get the behavior in check, medically and with his therapist through the local mental health facility. Then last but certainly not least she wants to admit him for a few days for some more extensive testing to pin point exactly where the problems are originating and whether or not surgical intervention would be warranted to improve his quality of life.
So, for now our heads are still spinning with the knowledge and information we obtained yesterday and yet at the same time I am so excited to finally have a doctor that I can actually trust when it comes to my little angel and all of his issues. I do have to fight with the insurance because they waited until the last moment(Thursday) to put a glitch in the coverage of an out of state facility, but I am confident that our God will work it all out in our favor. I am believing in a healing and I also believe that sometimes those miracles are carried out by other people in this case a doctor. I have to have hope because without that we have nothing.
I will post the results of the Athena test and any new aspects as they come.

Saturday, January 29, 2005 9:45 PM CST

Between the ages of five and 12 Hawk's condition, medically has stayed the same.There are still tubers on his kidney that have not changed, his heart ones are the same, as are the ones on his brain. There have been a few new skin lesions that have popped up, but they are small and have not been a problem so we just monitor them with his dermatologist.
He has tried several medications and seen many doctors. We have all done our best to support Hawk with his struggles to just be normal. The toughest part as his mother is that I can't just kiss it and make it go away. There is so much difficulty in knowing which symptoms are associated with the TSC , the abuse he has endured , the medicines he has taken and what is just typical little boy behavior. No matter what he is an inspiration to all of us!
Hawk does wear glasses now as he is near sighted(not due to the TSC) and he has been diagnosed with a slight hearing deficit, not sure if that is TSC related or not.

Thursday, January 13, 2005 3:13 PM CST

Hawk is now 5 years old. He is getting ready for kindergarten and his new baby brother has arrived, we named this one Wolf. Wolf seems to have a relaxing effect on Hawk and Hawk is very much into helping to care for the baby. I was so relieved to see this, whenever Hawk got near Wolf,he would instantly slow down and respond with kindness and compassion.
I took Hawk to register for school and they said he was not ready. I told that teacher"you go tell my son that after graduating his preschool you won't let him in becvause you don't think he's ready because I will not crush all his hard work like that!" Needless to say, he started school just like the others, only with a little more one on one help.
His daddy got a good job and we had to move again. This school is a lot smaller than the other one and the teacher/principle can count her class on two hands! Loads of extra help for each child and Hawk excelled so well.
Still having siezures and behavior problems though.

Thursday, January 13, 2005 2:56 PM CST

When Hawk was four I got pregnant again. This time I was scared. Not of the baby getting TS because my new hubby does not carry it, but of what TS would do to him. Hawk was quite aggressive at this point and no amount of parenting classes , restraining techniques, and behavior meds seemed to be working.We tried ritalin thinking it was his ADHD, but after a week of bouncing off the walls for 23 hours a day, we stopped that!Then we added adderall, that seemed to work for a while. At the tender age of 4 he stabbed his dad with a screwdriver while they were watching t.v. together and drew blood! I was sooo scared for the baby inside me.
Good news though, Hawk has graduated his preschool and they say he can start kindergarten with his peers !!! We were sooo proud!!!

Thursday, January 13, 2005 2:43 PM CST

One week after his 3rd birthday, Hawk told me that he was being hurt by his father in unspeakable ways and I grabbed my boys and left. I had nowhere to go but I could not stay there so we left. We stayed with one friend after another until the welcome would wear out while I tried to get us on our feet. When we ran out of options, and the only place left was a filthy, scary homeless shelter, I made the hardest decision of my life and voluntarily placed them in foster care.
I was very active in the care of my children and was able to make sure that Hawk's TS was still on the front burner. I met a wonderful friend who let me cry a river whenever I needed to and went to all the custody hearings with me. After I got into a home and back on my feet I was granted full permanent custody and the friend who helped me get there and I were married. He is my husband Burt, and the man my boys now call dad.

Thursday, January 13, 2005 2:28 PM CST

2! What a wonderful age. He was getting tested for everything under the sun. Poor Bear, he got dragged to so many appointments . We finally had to start leaving him with the babysitter so that I could focus on what the docs were saying about Hawk.
Then it came. The diagnosis that would forever change our lives came to me at a neuro appointment. Dr Riley examined Hawk then asked to look at Bear. My heart began to race....not both of them was all I could think. He used what is called a woods lamp and let out a sigh. "Well, he does not have it" "Have what?"I asked. He sat down and told me that my son had a heriditary condition called Tuberous sclerosis. "Tuber-huh?", I asked. I sat there in shock as the doctor tried to help me understand a condition that was as he put it fairly new to the medical profession and there was not a lot known about it. I made him write it down for me and left in total shock.
I tried to research, but could only find a few articles about it and they were all so devastating. I asked Hawk's great aunt(who worked with special kids) and that too was depressing. I blamed myself and then Hawk's father who did not know he had it ( and is still in denial). I blamed Hawk's Grandmother for not knowing her son had something he could give my boys. I worried about if and when Bear would become symptommatic. The emotions were overwhelming and so was the rest of it.
I had to enroll Hawk in a special pre-school because of some developemental delays.When he wasn't there we were at doctors or trying some new thing that some do gooder thought would help him. Before I knew it, My son was 3 years old.

Thursday, January 13, 2005 2:03 PM CST

Okay now Hawk is a 1 year old and he has had a lot of wonderful experiences in the mountains including a face to face encounter with a black bear. Our next stop is Daytona Beach Florida. I have never been to an ocean and neither had Hawk. He loved it. The only animals he came in contact with here were the seagulls and huge spiders (yuck). Next we got to Los Angeles California. It was during this trip that I noticed there was a problem. As I watched Hawk sleep in his car seat, I noticed him open his eyes very abruptly and his body began to twitch. I tried to wake him but couldn't until after the twitching ended and I knew it was a siezure. I was horrified!
As soon as we got to California I took him to the doctor. No help! I took him to several doctors and they all said it was normal for a kid his age. By this point I was furious, why did they not believe me? We lasted through an earthquake and two days later I gave birth to Hawk's little brother...Bear.
About a month after Bear's birth, Hawk had his first grand mal siezure. He was rushed by ambulance to the nearest hospital where he was given pheno barbitol and sent home. No diagnostic tests, and of course no daignosis. I gave him his medicine religiously but it made no difference in the types and frequency of his siezure activity.With all this going on we decided to go back home to Colorado where we would have support and hopefully a better doctor to get us all through this.
We moved in with the in-laws and immediately set up an appointment with their doctor.
Finally a doctor who believed me and did not think I was just an inexperienced-over-paranoid-first-time mother.She immediately took Hawk off the Pheno-barb that was not working and put him on Dilantin. She told me about recources for families with special needs kids and set up a whole slew of testing. I had no idea what we were in for and I did not care if it meant my son might be diagnosed and treated for whatever was wrong.
The next few months were crazy and before I knew it, Hawk was at that terrible stage......2!

Thursday, January 13, 2005 1:38 PM CST

Hi, I am Becca and Hawk is my son. I am going to tell you a little bit about Hawk, his life, and how Tuberous sclerosis has effected our entire family. To make this easier I will catch you up on the past 12 years of his life one year at a time. I will do my best to get the dates right or as close as possible, bear with me as this is the first time I have ever done this.
Our story started in the Autumn of 1991 when I found out that I was pregnant with my first child.I was so happy and did everything I was supposed to do. Despite my efforts, The pregnancy was aweful. The morning sickness was really 24/7 sickness and all the docs could tell me was that I was allergic to the pregnancy. After 9 months of this and a very long labor, Hawk was born. It was June 15th, 1992 and he was the most beautiful thing I had ever seen. He was healthy at 6 lbs 7oz and 19 in long. He had all his parts, two eyes ten fingers and so on. He had a head full of pitch black hair that stood straight on end. And he had white "birthmarks" just like his father's on his back.
We took him home and adored him as all parents do. The first year of his life was normal(or so we thought) He was a bit slow on some things, but we thought thta was because he was so spoiled he did not have to do anything himself. I became pregnant again and we decided to get the wanderlust out of our systems while the kids were young so we moved. First we camped in Buelah national Forest for a few months where Hawk had his first birthday.

Wednesday, January 12, 2005 7:37 AM CST

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