Thursday, December 18, 2008
On another note...Most of you probably remember me freaking out a couple months ago about a terrible mistake I made with my finances that caused a whirlwind of issues. Our family struggled and continues to from that! We are finally to the point where with payment arrangements we are making it! But I was really dreading the holidays because I was so afraid I was going to fall into a hole again! I made myself a promise that I was not going to go broke over Christmas, that is not what God has in mind for us, that is not his plan. The birth of his son is not event that is suppose to make people spend money they don't have and suffer in the end! So I sat my kids down and told them that this year was going to be tough and that "under the tree" might not be so full, but at the same time we were going to try and start some new holiday traditions and really enjoy our time together! All but one of them took it well!
Some amazing things have happened! We ended up getting a Thanksgiving basket from a wonderful family, not only did we get the turkey with all the fixings but they also brought milk, eggs and bread! It was amazing! Then for Christmas Seaira's school adopted our family and I went to pick up the gifts the other day and I was shocked! We had 6 boxes full of presents, each child had about 7 things! I cried and cried some more, happy tears of course! So here's a great big Thank you to our friends at Lake Shore! I'll be taking lots of pictures so you can all see how excited the kids are going to be! Right now there are the 2 gifts a piece I got them sitting out and the rest I have put up and I'm not going to put them under the tree until the night before, they will be shocked! This has been really tough for me, because every year one of our traditions is taking a name off the tree and going shopping for someone else and we always do food donations for the Thanksgiving baskets that go out, so to be on the other end of that is really tough, but I am forever grateful and that just means next year we are going have to give more then normal, because it truly does go to family's in need!
Thanks everyone, have a Marry Christmas!
Wednesday, November 26, 2008
She saw her neuro this morning and he wants to change seizure meds all together, so here is what she is currently on...Adivant, Lamictal, Keppra, and Diastat (for emergencies). Just tonight we added Dilantin and a very strong dose. She will go 7 days before we can stop any of the others meds so she is going to be very drugged up! I am praying the side effects will not be too dramatic but God only ones what might happen!
I will try very hard to keep you all posted with in this next week or two!
I recently found this website called Mini Miracles. They make clothing for special needs kids!
Seaira is modeling the Pajama's. I love them, they are so soft, they have a pocket that opens up for her feeding tube and snaps like the baby ones have for easy changing! They are great. We also ordered the onesies, T-shirt, and jacket. I love them all! The woman who owns or runs (not sure which, proabably both) the company is Victoria and she is the sweetest!
We were able to use Seaira's DDD funding for this, please remember that Seaira does not have a medical coupon nor any sort of waiver, this funding if I unsderstand correctly comes from a piolet program and she recieves it because she's not recieving the benefits she deserves, so if anyone recieves those kind of funds you can use them for this type of thing!
Monday, November 17, 2008
Next, I spoke with Dr. Konkol's nurse today (the neuro) and we are going to increase the dose of Keppra to 4 ml's 3x's a day instead of 2. Even though this medicine takes away from her mobility, we have to get the seizures stopped and get her off of the Adavant and Diastat, those are two that are not suppose to be long term but have turned into a daily thing! Once we get seizures under control, then we can look at trying something completely different, but the goal is to get the nasty buggers under control and soon!
I don't know what to do!
Sunday, November 9, 2008
Ok so last neuro appointment we decreased the Adivant by just a little and the next day she has a couple mild seizures, that went on for a good 4 more days. So we decided to add back a little of the Adivant but not the full dose, well last night she ended up having a cluster of about 15 seizures and I had to give her the Diastat! Today she's just been real sleepy!
If I keep her on all the meds then she just lies in med all day unable to function right, if we decrease the meds at all them she goes into seizure mode and ends up being in bed all day! GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR
Thursday, November 6, 2008
Tuesday, November 4, 2008
First I should start with Seaira's Neuro appointment on the 30th! Things went well, her VNS got adjusted again and we are going to try to slowly come off of the Adivant this time instead of the Kepra, so far so good!!
Seaira had a really hard time trying to sit with us while we carved pumpkins. We tried having her in her wheelchair up at the table but she was uncomfortable, I'm still not sure exactly what was bothering her but finally we got some blankets and pillows and put them on the floor and we tried to show her everything we were doing and that worked the best!
On Thursday we did a Trick or Treating event at the state office that is put on for foster kids and their families! All the case workers decorated their work stations and passed out candy, it was really cute! There was also a pizza party afterwards! So we made that Seaira's Halloween and then her and Isaiah helped me pass out candy on Halloween to the 3 trick or treaters we had!
Seaira doesn't like being dressed up in costumes so I just get her a cute Halloween outfit from Target and call it good!! She has been really enjoying eating all the candy! =)
Sunday, October 26, 2008
She had that cold for a little bit and has completely recovered from that now! We are dealing with constipation, which as most of you know is really common with our Rett Angels but Seaira hasn't struggled much with it over the years, hopefully it's just short term! She recently had a check up with the surgeon to see how her incision was doing from her VNS replacement and it seems to be fine, I still think it looks horrible but it is what it is!
We went to the Pumpkin Patch Friday morning with Jayen's preschool class! Seaira didn't enjoy it as much as I hoped she would but it could have been so much worse! It was really cold and that did not help matters! Daddy picked out the biggest pumpkin he could find her and that made her smile!
She will see her neuro on the 30th but I really don't forsee any changes, any time we change meds we get more seizures but she is totally losing her mobility by beeing on all these meds, it breaks my heart, my once some-what independent girl is pretty much bed ridden now! No more hopping around to get to where she wants to go! :o(
I will post some pumpkin patch pics in a new blog, and I wanted to give a special thanks to Stacy, it was you that made it possible for us to go!! :o)
Thursday, October 23, 2008
There is a little girl in Seaira's class named Tatum, she has been in the hospital for a while now and is not doing well at all and the out come does not look good! I don't know what her "condition" is just that she is severely handi-cap and has had a lot of health issues!
Please keep her and her family in your prayers right now!
Sunday, October 19, 2008
What a blessing. It's wonderful to hear of people caring for people.
Thank you Katie, Sherri, Stacy, Nancy, Cynthia, Robin and Mona for helping a friend of ours who is a great mom, wife and friend.
I would give more kudos but darn myspace will only let me give ya 2....
Posted by Leanne on Oct 19, 2008 6:56 PM****************
Saturday, October 18, 2008
I don't want to go into all the details but lets just say they are a wonderful group of ladies and I couldn't be more grateful for everything they have done for us, it will not be forgotten!
Thank you Katie, Sherri, Stacy, Nancy, Cynthia, Robin and Mona (I really hope I didn't forget anyone)
I finally feel like there is hope to come out of this mess and that feels good!!!!!!!!
Friday, October 17, 2008
Thursday, October 16, 2008
Wednesday, October 15, 2008
I looked through the boxes and there is some awesome stuff in there, they are going to be soooo excited and I'm gonna save that gas card so that I can take then to the Pumkin Patch with Jayden's class! Your awesome!!
AS for my other situation the van payment won by default this morning (it was taken out right as Jeff's check was deposited) and I called the PUD this morning and I have until tomorrow to pay it!
Any body win the lottery recently? Just Kidding! Anyway that is where we are at right now!
Tuesday, October 14, 2008
If any of you are on my Myspace and read my blogs you probably are aware that my family is going through a really rough spot right now! I made a serious error two months ago that made an extra $1,000 go out on a bill and the company refused to refund it due to late fees I had and now I can't recover! My checking account is overdrawn by $800.00 all in NSF fees except for a $200.00 payemnt that they let slip through, the rest is all fees! The electric company should find out today that my $400.00 (two month payment) payment bounced, my van payment is now 35 days past due and they are calling non-stop plus rent is now past due! Jeff gets paid tomorrow and I will be able to pay one bill and have nothing left over! I am so stressed right now! If you could please keep us in your thoughts and prayers during this rough time I would really appericate it! If I disappear off of here for a while that will be because of my electric being shut off!
Friday, October 3, 2008
Tonight I decided to put Seaira back in her own bed, she has been sleeping in mine since July when all the seizures started! Well that was a big mistake, guess what started back up about 10 minutes after I did that????? You got it seizures are back! I guess we won't be decreasing the one med after all. It sucks, she can't even sit up on her own anymore. :o(
I was suppose to be able to take her to school tomorrow and leave her for a bit because one of her old staff assistants was going to be working with her and now she won't be able to go! :o(
I would just like to feel like there is going to be some sort of relief for her!!!!
Please continue to keep her in your thoughts and prayers!
Tuesday, September 30, 2008
Everything is looking good!!
Friday, September 26, 2008
I love and care for all the permanent staff members in her class, I feel life they are family, and I know if they had the power to change things they would!!
I am an overly emotional person and I really should wait until I'm calm to type things so I can make sure they come out right! Sorry!
Thursday, September 25, 2008
I guess I'll begin with the bathroom! As must of you know we were suppose to be able to use Seaira's DDD funding to have our bathroom modified so that it would be easier to bathe Seaira! For those of you who don't know, Seaira weighs 72 pounds and I'm not suppose to lift over 10 due to my bad back (I have Fibermyalgia) so we're going to get a shower made so that we could "roll" her in and then she would be at the right height for me to bathe her! Anyway, it was quite a fight just to get the approval for this but we got it. We had two contractors to chose from one came way closer to the amount we were allotted and the other was twice as much. So of course we pick the lesser of the two and now we find out he has a big issue with state from a payment on a different job and it didn't go in his favor so he has chose not to do any more jobs for the state which leaves us with no one else to chose from but the one that was twice as much, well I don't have an extra $6,000 lying around for that!
Then there is the issue with school! She still does not have a one on one aide yet! It is depressing me seeing all the people who use to work with her working with these newer children. Seaira is in 5th grade and has been there the longest out of all the kids there and we can't get anyone to work with her. It just hurts my feelings so much! I feel like nobody wants to work with her. Sitting in circle time with her today I caught her looking around at everyone and then she looked me with the saddest eyes, she sees it she understands that her favorite people now have other kiddos to work with. When I left her school I cried the whole way home! Why can't she have someone who already knows her? She's stuck with an a sub right now that I can't stand, the women means well but she doesn't seem to be "all there", Seaira has medical issues and I need someone who is "all there" so that I can feel like she is safe, but again this is just a sub so if and when they find someone permanent I get to continue going to school with her to train them to, I think the school should just add me to their payroll!
Oh back to the DDD funding, since I found out we couldn't do the bathroom I was checking into "adaptive clothing" which is something on the list that her funds can be used for, so I find this web site called mini-miracles and they have things that are made for kids with feeding tubes but they are really expensive so I ask the DDD worker about that he says that I have to pay for it first and then the reimburse me for it! Well if I had that kind of money I would order them myself! I can't afford to be with out $250.00 for any period of time right now! GRRRRRRRRRRRR
Oh did I mention one of our cats shit on the floor of my van this morning!
Ya life is great!!!!!!!!!!
Monday, September 22, 2008
Saturday, September 20, 2008
and the curve was 8% worse in just a 3 month period. We got her back brace fixed so it fits better and she has to go back in 4 months if there is no improvement than we have to schedule surgery(rods in her back)! :o(
I also talked to her neurologist today and we are adjusting meds yet again in hopes of controlling the seizures. He thinks that her recent growing spurt and her scoliosis getting worse could be causing the extra activity??
That's all I've got for now!
Tuesday, September 16, 2008
I received the invites for the Phantom Tea Party. Here's how it works.....
You message me your address, I send you invite which contains a bag of tea, you drink it in Seaira's honor and if you want you can you send a donation in her name to The International Rett Syndrome Foundation! It's a great way to spread awareness and earn money for the wonderful foundation which was created for families like mine!
Gail and Seaira
I made an appointment this Thursday for Seaira to be seen at Shriners. Her back is getting so bad that I don't want to wait until November for her to be seen!
Well that's all to report today, so far!
Monday, September 15, 2008
Friday, September 12, 2008
Our friends Terrri and Abby got to come visit us from Missouri this last week and we had an amazing time! Seaira held up very well for our trip to the beach and the trip the Falls. She was able to wait until the night before they were leaving to have her seizures and I can't help be feel like she herself fought them off that long! She went without any seizures today but she is so drugged up that we don't get very much a wake time from her but when she does wake up she is full of smiles! She's been hooked up to the feeding pump the last todays but today I did get her to eat some jello and drink a couple bottles of liquid! Her neuroligist is on vaction so we have to wait until he gets back to figure out what our next move is!
Thanks for all the prayers and well wishes!!
Is this as good as it gets???????????
Wednesday, September 10, 2008
She had about
It's 1:30 right
She has had at least
I just want my baby girl back,
Wednesday, September 3, 2008
That will be 4 medic
Tuesday, September 2, 2008
She was suppose to start school but I'm going to have to keep her out until things settle down. She is going to end up with a brand new staff assistant and there is no way I want her to have to deal with seizures her first week at school.
Seaira slept until 10:00am and was awake for maybe an hour and went back to sleep and has been sleeping every sense!
I will keep you posted!
Thursday, August 28, 2008
This is such a load of crap! When Seaira first entered into Vancouver School District we had to fight for her staff assistant and here we are again 6 years later doing it again! She doesn't walk, she doesn't talk, she has seizures, she has a feeding tube, she can not do one single task on her own!
I can live with the cards I have been dealt really I can but why the hell does everything have to be such a damn fight??????
This will be a huge fight and I will sue their asses if I have to!
I will keep you all posted on how this all turns out!!
Monday, August 25, 2008
Friday, August 22, 2008
Tuesday, August 19, 2008
She goes in on Friday to her the VNS programmed to the right settings!
She has been doing really well and seizure free!!
Friday, August 15, 2008
This is suppose to be healing fine, doesn't look like to me but what do I know??
Seaira has been doing really well except for the fact that I don't like the way her incision is healing, the doctors say it looks good to them??? I think she is going to have one ugly scar!
She goes back in on Monday to have it looked at again and she goes in on the 22nd to have her Vegal Nerve Stimulator turned on to the correct settings and I'm hoping at that time we will be able to at least cut back on the Kepra!! I'll keep you posted
Friday, August 8, 2008
Ok here are the pics, of course she wouldn't smile for anything, but we take what we can get!
Today was the first day she could have a shower and that the bandage could come off and stay off! She is doing really well other then still wanting to claw at it! She's giving me quite the work out! Her f/u appointment is on the 18th. I'll find out Monday when her appointment with her neurologist will be to get the VNS settings set!
***Thank you Stacy for delicious dinner last and the visit, it was so good to see you, Seaira says thanks for the gummy's!"***
Tuesday, August 5, 2008
I'll try and get some picture with in the next couple of days, when she's more awake and alert!
Right now she's on a pretty strong dose of antibiotics to help prevent any infections and is taking Oxycodone for the pain. She's not eating regular meals yet but she is hooked up to her feeding pump and is drinking plenty of fluids! She has to wait 4 days to have a shower which is nasty considering they got iodine in her hair! After that she can have showers but no baths or swimming for 14 days! Her device got turned on to a low basic setting until she goes to see her neurologist!
I think that is about all for now!
Monday, August 4, 2008
Sunday, August 3, 2008
Friday, August 1, 2008
Monday, July 28, 2008
Well all my bitching worked and they approved funding for it so the state is paying $5800.00 and we will cover the remainder $1200.00 of it!
I'm so excited! Now I have to contact the contractor and find out when he's available! Yeah!!
Sunday, July 27, 2008
The last couple of days have been pretty darn good for her! I wouldn't say she is a 100% back to normal but there is a big improvement! The Kepra she is taking was increased from 1.5 ml to 3.0 ml and I think that has made the difference in the amount of seizures she had been having! Her pre-op appointment is Wednesday at 10:00 (second time for that) and her surgery is August 4th!
I'll let you know if there are any changes or updates before then!
Wednesday, July 23, 2008
I also get to go back up the clinic next week for the pre-op because for whatever reason the nurse didn't realize that was why we where there today?? Weird!
She did have new ex-rays done so the surgeon can have an idea of what everything looks like before he goes in there!
So in the mean time, I'm stuck at home with a child still having seizures (at night only right now) and a child that can't hardly sit up on her own, side effect of the new med I'm guessing!
I need a vacation!
Monday, July 21, 2008
First I want to ask all of you fellow bloggers how your family can leave comments that don't have blogger accounts? To those of you trying to that can't I apologize but feel free to leave an us an email for now Jasminsback4more@msn.com.
Now on to Miss Seaira... Her seizures have got better since her neuro has added Kepra, but she is still having them at night, last night only 3 (that I noticed) and the night before 6. She goes in this Wednesday morning for her pre-op appointment to have her Vegal Nerve Stimulator replaced so we will find out that day when surgery is (the device is 5 years old and is not working properly now). Her body isn't reacting very well to the Kerpa, she is very cranky and she can't seem to hold her body up has well, she swaying from side to side a lot!
Monday, July 14, 2008
I've pretty much been stuck by her side this whole time, writing down everything that's happened, how long, what kind! I got to leave the house for about 45 minutes to run to a WIC appointment for the baby and then to go p/u the stuff from the store, that is it! :o(
If anyone feels like dropping a meal buy or something we would welcome that with open arms, my kids love pizza don't get me wrong, but I haven't been able to cook for them at all since this has started! Lisa has helped out when she's here in that department too!
Ok so people say I never ask for help and no one can help me unless I do...so there it is! Thank you all so much! Love ya all!
Saturday, July 12, 2008
We got out of the hospital around 9:30 last night. They did a check over to make sure there was no other illness going on..cold, fever, flu, infections..and there was nothing. They also took an x-ray of her VNS to make sure it was still connected and it was. We thought they were going to adjust her meds and then send us home but the on call neuro decided since she has an appt this Tuesday with her neuro that we wants to let him decided what to do. So in the mean time I am suppose to document all her seizures and and if they get bad just give her more Diastat. Also he chalks it all up to just being a part of Rett Syndrome! :o(
As I was typing this she just had another! :o(
Friday, July 11, 2008
Sue Seaira's PT wanted to me to state that she realizes that the seat needs raised on the bike so it would fit Seaira better but once we got her on we couldn't take her off and do adjustments, Seaira would have gotten crabby and lost interest! With that said.....
Tuesday, July 8, 2008
The baby still hasn't gone home but she's handling things so much better and she really enjoying one on one time with mom while he is in daycare, Zack should be going home tomorrow!
Tuesday, July 1, 2008
She's so silly!
Sunday, June 29, 2008
I hope everyone had a wonderful day!
Rett Syndrome (RS) is a unique neurodevelopmental disorder which begins to show its affects in infancy or early childhood. It is seen almost exclusively in females, although it can occur rarely in boys. It is found in all racial and ethnic groups throughout the world.
At what age does Rett syndrome begin?
The age when RS begins and the severity of different symptoms may vary. The child with RS is usually born healthy and shows an early period of apparently normal or near normal development until 6-18 months of life, when there is a slowing down or stagnation of skills. A period of regression then follows when she loses communication skills and purposeful use of her hands and slowing of the normal rate of head growth become apparent. Soon, stereotyped hand movements and gait disturbances are noted. Other problems may include disorganized breathing patterns which occur when she is awake and seizures. There may be a period of isolation or withdrawal when she is irritable and cries inconsolably. Over time, motor problems may increase, while interaction and communication, especially with eye gaze, seizures, and irregular breathing may improve
What kind of handicaps will she have?
Apraxia (dyspraxia), the inability (or reduced ability) to program the body to perform motor movements, is the most fundamental and severely handicapping aspect of RS. It can interfere with every body movement, including eye gaze and speech, making it difficult for the girl with RS to do what she wants to do. Due to this apraxia and her inability to speak, it is very difficult to make an accurate assessment of her intelligence. Most traditional testing methods require her to use her hands and/or speech, which may be impossible for the girl with RS. Her mobility may be delayed and she may have difficulty crawling or walking.
Since skills are lost, is RS degenerative?
Rett syndrome is not a degenerative disorder, but rather is a neurodevelopmental disorder. Barring illness or complications, survival into adulthood is expected.
What are the causes of death?
It is important to note that only ~5% of cases reported to the IRSA have resulted in death. This means that 95% of those diagnosed are still living. The most frequently reported causes of death (one-quarter of deaths) are variations of sudden, unexplained death with no apparent underlying cause such as an acute injury or infection. The factors most strongly associated with an increased risk of sudden unexplained death in RS are uncontrolled seizures, swallowing difficulties and lack of mobility. Physical, occupational therapy, nutritional status or living arrangements made no difference in the incidence of sudden unexplained death. Other deaths have resulted from pneumonia. The factors most strongly associated with an increased risk of death by pneumonia are compromised lung function due to scoliosis and difficulty swallowing. Other causes of death include malnutrition, intestinal perforation or twisted bowel, as well as accidents and illness.
What has research found?
Rett Syndrome was previously described as a neurodegenerative disorder, with very poor prognosis and little potential for learning. Scientific studies have now identified Rett Syndrome as a disorder of neurodevelopmental arrest, which begins shortly before or after birth at a critical time of brain and synapse formation