Hey Paula,

Are you out there girl? I hope that Rebecca is OK? http://www.healthboards.com/ubb/confused.gif I haven't seen you here for awhile.

Have a couple of questions for you about arranging care for Rebecca while you get away. Is this something that you were ever able to do? Who did you get to stay with her?

After months of caring for both Jake and his granddad we need a break. Even a small one of a few hours to get away from it all... Somehow just to close the front door and walk away from Epilepsy and Alzheimer's and be Ralph and Lisa - husband and wife. I miss him, even though we are in the same house every day, someone always needs our attention!!

Also I think it was you who said that you had gotten a seizure alert dog. Something I'm kicking around for Jake. I hear there is a long wait list and want to get him on it now, before we have to start thinking about school programs and such!

You are in my thoughts and prays even if I don't see you posting.

Hugs

Lisa and Jake

PS He's coming off Dilantin and seems to gaining balance by the bucket loads everyday. He stood by himself for several seconds the other night and before we could get a good grip on the little raskel he took off and had 5 steps across the floor... http://www.healthboards.com/ubb/bouncing.gif Still don't have complete control, but getting closer.

She responded to the QOL post! She is out there!! My post will bring this thread to the top of the board and she will see it!! I saw her!!

Thanks Kitty,

I was worried bout her and her daughter. I'll have to pop in and see what she had to say to Mr. Robin Whaterver.

BTW, Kisses are back on Jake's can do list! And he's pulled up on the glass slider and left me the most beautiful mess of fingerprints a mother could ever want! Sounds pretty silly, but I stood there and cried like a baby. ... and no, I couldn't bring myself to wash the window!

You're a dear.

L

Lisa G.,
you know, reading that about Jake almost makes Me cry and I dont even know the two of you!! Poor baby, and good for you for being the strong, caring mother that you are.
Thats all
Love and healing to your son,
Cordelia

Hi Lisa - yup I'm here - have answered a few posts here and there and am always reading what I can. Seems you are making progress. Don't get discouraged if you have to take a few steps back once in a while ok? Its obvious you appreciate every gain - you go girl. I am very proud of you. Jake is who he is and not to be compared to anyone else. You seem realistic in your approach and that will get you very far in this journey. Rebecca is doing better - whew - that was quite scary a few months ago. She has now gained 5 lbs and is up to 85 lbs. She is presently doing well during the day - although having lots of complex partials (we call her name or nudge her and she usually comes out of it). Nights are usually difficult with tonic clonics that go on for 20 minutes and then the rest of the night is without sleep. Rebecca
used to sleep a long time after them but not anymore. I have a bed in her room and now sleep with her. Our government provides us with support and we currently receive 2 nights of nursing - lucky us. Nurse comes tonight and we are looking forward to it. I also have spent many years advocating for a respite home for medically fragile children. It just opened this year and is staffed by nurses and developmental support. It is a regular looking home which I feel is the only appropriate place for our children to be. Families get 2 weekends every 3 months - can ask for day stays or crisis stays as well. It was a long and hard process, but I was very passionate in our regions needing it. In fact it serves 220 families with 6-8 kids at a time. So, I put my energy into that and it made me feel that I could help with some change in this world. There was one in another community 1 1/2 hours away and Rebecca went for the first time when she was 13. Lisa - that was too late. I advocate for parents to start taking there children when they are very young so everyone gets used to it. A big plus is Mom and Dad can regroup and spend time alone or with other children. Rebecca is now only on Epival - meds really do nothing so this is only to keep a base in her. Our government also provides us with service workers which can be difficult to find, so I hired some friends who already loved Rebecca. It worked out well for everyone and they know they are making a huge difference in her life. She has learned so much from them. Again, the system has to be flexible to accomodate our changing needs as these kids grow up - so we shall see what the future brings - Rebecca just turned 18 - we love her from so deep within, but we have to make future plans. Working on that. Lisa, sounds like you do lots of caregiving - make sure to caregive yourself. I do some yoga and just took up watercolor painting. When I'm really stressed, I paint - soooooo sometimes I paint alot. Here is to you and yours Lisa..........loving life and all it has to offer...........Paula

One more thing Lisa - you asked about the guide dog - we did try it but because Rebecca is mentally handicapped (here they call it developmentally delayed but that threw me off when she was really young because I thought she would catch up) Anyway they had to give her a disqualified one because she could not take total control. It ended up with me outside with the dog and Rebecca inside - yikes. My husband said "lets relook at this picture". My goal was for it to provide companionship and maybe alert me when she had a seizure so as to give me more freedom in my house. It was a golden lab - beautiful. That was a few years ago and a huge process but maybe things have changed since them. A great concept.
Hey Kittymom - thanks for being so involved in this board and supportive. It is a wonderful resource for many - wish I had this support when Rebecca was very young, but I'm enjoying it now none- the -less......."Grant me the courage to change the things I can".........Paula

Hi Paula,

Sorry it’s taken me forever and a day to get back to you. I’ve tried a couple of different times and either had server issues (from the office) or pop up issues (from home). The pop ups at home are killing my computer. We are trying to find a way around it. Looks like purchasing some new software will be the only out. Work is crazy right now as well, so my time at the office is mostly business related (as it should be), then when I do get time – the server goes down! Anyway, thanks for getting back to me.

I didn’t even realize that there could be respite care available for children like Jake and Rebecca. I guess I should have questioned this earlier. What a wonderful legacy!! To have worked so long for this type of program, you are a very special woman and Rebecca is very lucky to have you for her mother! I don’t know that I would be able to talk Jake’s Daddy into leaving him any place; he’s a very devoted and protective father.

Jake sleeps with us still when he’s had seizures. Right now it’s not an issue but, as he gets bigger... I’ve thought about putting a pull out couch in his room or placing him in a double bed when he moves out of the crib. We have a while yet to formulate a game plan for that one.

We remain cautiously optimistic on Jake’s long-term ability. I guess the next 18 months will be a big indicator for the years to come. The neuro. just will not commit on his long term prognosis yet. I can understand that, but at the same time - as his Mother, I have to know...

His seizure activity seems to have morphed over the past 3 months. I’m sure it has to do with all the change in his meds and maybe the fact that he’s getting a bit older. We are getting whole weeks now between seizures and they are coming in clusters of 5 to 20 in just a few hours. Still nothing like you have faced with Rebecca, so I feel like a whiner when I talk to you about it. But, you seem to understand better then anyone I’ve ran across. We have taken that one step forward only to move two back! I know what you mean about being realistic. I try very hard not to get my hopes very high, but there are days I just can't help it! Not until the Dr tells my other wise.

I took him with me to the grocery yesterday so his Daddy could get at least a little break. He didn’t want to sit in the cart, was wiggling and fussing, so I got him out and he walked holding on to the cart and/or my finger for the better part of the trip. Took me 2.5 hours when I normally can get it done in an hour. He’s pulling up on everything and crawling around the family room. He still is not walking well (not at all on his own), but he’s trying so hard, the same with talking. He talks a blue streak – but the only thing you can really get is Momma and get up. Can’t wait for real words again!

We are planning on the seizure alert dog and will start the process in Aug. I want to talk to the school that he will attend first about his IEP and see how it would fit. I hate that just because of Rebecca’s handicap you could not get a fully trained dog. It would seem that she would get the best of breed rather then the other way around. It does look like a huge process in getting one. The current wait list is 3 to 5 years. So I want to get working on it sooner as apposed to later. My husband wasn’t real sold on the idea; he didn’t want to see Jake set apart from other children in school. My thinking is I would rather him be the kid with the cool dog rather then the kid who turns blue and jerks around on the floor. I’m hoping that the dog would be able to alert him so he could leave the classroom before the seizure. I know that I’m probably over simplifying the process, but I have to hold on to that for now.

I have been trying to get back into my normal yoga work out. But, since we’ve moved Jake’s first meds to 6AM, I just can't seem to find the time. The 6 to 6:30 time frame was mine, I haven’t been able to readjust yet. I think it’s great that you took up painting. I can’t draw a straight line so I took up photography years ago (did it for a living BC – before children) – So I have very slowly started taking pictures again, just for me. I do it with the digital camera now so I don’t have to worry about a darkroom and I can share my stuff with family and friends online. We garden as well. There is a small creek (during the rainy season) behind our house that dh has done a great job with. Since the house is newer there was no landscaping – it’s very slowly taking shape!

Jacob’s Journey has brought me in contact with so many wonderful people, but I believe you have to be at the top of the list. I am still in awe of what you have done for the children in your area. Thank you so much for helping me through this trying time.

That goes for everyone here! Given everything else going on in our lives, we have yet to go to a support meeting. You ARE my support!

I have never been a person to place a person or group of people in hero status... But, I have now – you are all my heroes. Thank you,

Hugs and prayers to all!

Lisa and Jake

Hi again Lisa - I'm glad you responded and that life is moving along for you.I was wondering....... Who watches Jake while you are at work?Is it possible that person could do a few hours now and then so that you and your hubby could have a date? Even coffee at a nice cafe - ya. Lisa - it is very important. I know I keep mentioning it, but I know a family can be very fragile if relationships aren't strong. You mentioned that your husband isn't comfortable leaving Jake, but maybe baby steps are needed in the beginning. Just to get used to it.A few hours now and then to start? Caregiving is huge Lisa. Jake wants both of you to be the best you can be for him. It takes time though. I can remember years ago, someone surprising me with tickets to the theatre which was an hour away and an all day event......well, I got all worked up just thinking about it. It was way too much at the time. Now I can do the all day thing and be fine. We have actually gone away for a week at a time on an annual basis, so life has changed despite the all consuming care of Rebecca. You mentioned the sleeping arrangements. Rebecca sleeps in a double bed and when things got rough, my husband or I would stay with her. I use to use a baby monitor in her room, but found that I have and continue to be like a new mom and hear her every move from my own room next door. It is an amazing talent we moms have. In the last year though, we now have an extra bed in her room and stay with her as the seizures have intensified of late. Last night I was with her and she had a 10 minute seizure at 4 a.m. but went back to sleep after. She does void which means changing sheets, but I can do that quite quickly with all this experience. Life has changed over the years as have the seizures. They were never this intense when she was younger - they were usually cluster seizures with head drops and complex partials. Every case is different of course. I can't remember, did they mention infantile spasms to you or lennox gastaut? I think you mentioned they did.......so it has quite a range. I was told she would never even crawl and yet - she is totally mobile. Rebecca provides us with lots of laughs in a day let me tell you - what we are thinking, sometimes she just says it - cracks us up. Its interesting how she sees the world. Good luck with the guide dog - a lot of effort, but great to have a plan.............till next time my friend.............loving life.........Paula

I was just reading thru the post and saw you mention my name. Thank you for your kind words about me being a help on this board. You made my day! I always try to help others in any way I can because they all seem to help me when I need it. I know how frustrating it is to have this disease but I never thought that I was due a compliment so THANK YOU!! It is always nice to hear. Like my signature says, "I love helping people because it helps me grow." Thank you guys!! You are the BEST!!

God Bless You!

KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Hi Paula,

Thank you for sharing your experiences with me. I’ll answer a couple of your later questions first. At several visits to the neuros office we have asked about Infantile Spasms and Lennox Gastaut and each time they’ve told us that this is not the case, that his EEG did not support either. The closest he comes to really fitting any type of E profile is TLE, with a left focal point. During his EEG in April the neuro was concerned because there was a lot of right side activity as well, that it was mirroring the activity on the left. They explained that sometimes one side will “copy” what the other is doing. After starting the Trileptol he did another EEG in May that showed no spikes or waves on either side, only a bit of background noise. They are telling us that he most likely he will not grow out this since TLE is normally an adult form of E. Our biggest concern is in language development right now. The left Temporal Lobe is the center for language. So... we plan to get him in speech therapy in the next couple of months.
Jake also has Hypotonia (low muscle tone), this on top of the loopy meds have added to his slow development

Care giving: It’s huge! No easy way to say it! Ralphy, my husband, is a stay at home Daddy. He left the work force 3 years ago to tend to his father. We decided that he needed to be with family at this time. When we made that decision we didn’t have Jake or even plan to have children together. So, I worry about my husband a lot. I spent 7 years home with my older children when they were small, and that was a lot more work then work was. So, I try and pick up when I walk in the door at night. I don’t give him a hard time when dinners not ready or if the sinks full of dishes. I know what his days are like. Both his dad and Jake in diapers, both need to be feed (his dad can no longer feed himself) and he has a steady troop of medical professionals in and out. Hospice is now involved with his father and Jake has PT and OT in the home as well. He says he’s OK with everything... I just hope that I don’t come home one night and find him in the fetal position.

Things are easier when the older kids are home. Jenny is 14 and Steve in 17. Jenny is wonderful with Jake. She has full understanding of the importance of complying with his med routine and she’s become used to the seizures. She took the Red Cross Baby Sitting Course and was certified in Infant CPR. She says she feels better about being alone with him after the CPR even if she knows that she wont need it. So, we do get a few breaks when she’s here (she spends summers with her Dad in Las Vegas). The down side is that her sitting skills have become public knowledge and I have to compete with other families some weekends for her services. http://www.healthboards.com/ubb/smile.gif I don’t mind – we normally trade a Momma and Daughter day at the beach for sitting, or sometimes an extra $30 for movies/mall trips. I don’t want her to feel taken advantage of. The cool thing – her main family is a couple of Dr’s. They were very impressed with her answers relating to Jake’s care. So they understand if Mom vetos a night that they have her scheduled. Steve, currently he’s at basic training. He has joined the Army – and does the whole male macho thing. Says Ralphy’s a sis for staying out of the work force like he has etc. Love him to death, but he’s a whole lot like his dad. He’s the play master where Jake is concerned, lots of rough and tumble stuff. And, for as gruff as he likes to sound, I’ve seen him sit with Jake with tears running down his face while he counted a seizure duration. The few times I’ve gotten to speak to him this summer; the first thing he says – is how’s my Lil’ Buddy.

It’s not just Mom’s that have the talent for hearing our children. Since Ralphy says home he’s been the night time champion – after I stopped nursing that is http://www.healthboards.com/ubb/wink.gif I do it on weekends. We have a great relationship. There is a bond between us, that I never had with my X or anyone for that matter. A family friend made the comment after spending a week with us that she feels part of the reason Jake is not more verbal may be that Daddy and Mommy tend to think on the same vibe and seem to do things in a very choreographed manner with little verbal communication. She may be right, but we both talk to him!!!

I know that the dog thing is a long way off and I also realize that there is going to be tons of administrative work involved. But, I am an Executive Administrative Assistant in an Internal Audit Dept. and Daddy (before leaving the workforce) worked in Quality Management and was an ISO certified auditor. So... Paperwork – no problem! http://www.healthboards.com/ubb/smile.gif I hope!

Wont to get this posted before another day goes by. Things are so crazy right now, I’m only typing a few lines at a time in word (just in case the server crashes again). Hope you don’t mind!

Kitty – if you read this – want you to know you’re on my hero list as well!

Hugs to all and again thanks for the shoulder to lean on!

Lisa and Jake

Lisa,

YOU are the one to be put on the hero list. I have told you befoe that you are one amazing woman dealing with all that you deal with every day. Thank you for the compliment. You are a great woman. You are one great wife, daughter-in-law, etc. but most of all you are the best MOMMY! Little Jake has to be one heck of a lucky boy to have a Mommy like you! Bless your hearts!!

God Bless you both,

KittyMom http://www.healthboards.com/ubb/wave.gif

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Hi Lisa!

How is little Jake doing?? Have they gotten him completely off of the Dilantin yet? I know drugs work differently on individual people, but if it's any help I feel SO much better since I am off of the Dilantin...they started slowing me down to 200 mgs then 100 mgs, until I was currently off. Some people have no bad effects with the Dilantin, unfortunately I did...the constant nausea and fatigue were more than I could deal with.

Hope he is feeling better, I read your post about the fingerprints on the glass and that was the sweetest thing I have ever seen I think!

Hugs to you,
Amy http://www.healthboards.com/ubb/smile.gif

Hi Lisa - well, I have a great respect for stay at home Dads.....my husband is an A+ in caregiving and would have loved to stay at home but it was not financially doable for us at the time. He is always up for taking a night shift even though he is gone for 12 hours working the next day. He works very hard on Rebecca's development and has managed to get her to do things that I can't. She is very much a routine person and so she establishes activities differently with each person. Just something for you to remember from the get go. In looking back, I wish I could have been more of the fun person. When she is with me, she does not want to do anything other than the usual daily tasks. For Dad, she will help in the kitchen.....play basketball.....go on lots of errands etc. Each caregiver she has does different things with her. How are Jakes nights for sleeping? I know he sleeps with you, but wondering if he is up alot? Also, what do you notice with his pupils dilating? When Rebecca's are huge - she is having lots of seizure activity - even though we can't see some of it. Regarding the speech specialist you are hoping to see? My feelings are, get on as many lists as are out there asap. Whether you use them or not is secondary. At least the options could potentially be there for you. There is such a shortagle of speech therapists where we live. I remember one of the drugs caused stuttering at one time and we went though quite a process to work that out of Rebecca. At the time we did not know it was the drug - darn.....wasted too much energy...so just a caution to you. Unfortunately I can't remember which drug it was - must have been one of the older ones, because she was quite young at the time. Sounds like Jake has siblings to help as well. Rebecca has a younger sister age 12......who is a total caregiver as well. Her sister handles it all very well, unless there is blood involved. We also have great neighbors who have washed blood off our walls, carried Rebecca off the street during a seizure, slept in our other daughters room with her, when she was very young and we had ambulance attendants getting ready to transport. They are amazing and always willing to run at a moments notice - and I do mean a moment. I have a list and I call when things get out of hand and need immediate help......they have seen it all. Well, keep in touch and till next time on a hot sunny day........loving life.....Paula

Hey Lisa!

I wanted to reply to this to make sure it went back to you....How is Jake doing on the Trileptol?? I was really liking the Lamictal (little side effects) but within the last 24 hours, I have developed a nasty rash! The doctor is having me cut down on the Lamictal until I am completely off and building up on Trileptol...I haven't been able to find much on it!

How is Jake doing?? And of course, mom too!

Amy http://www.healthboards.com/ubb/smile.gif