Seaira Hiebert

January 29th 2012

2012-01-29T22:25:00.000-08:00

Seaira had her 24 hour esophageal ph studay done on January 26th. This was done to find out if her acid reflux has got worse over the years. If indeed it has then she will have to have her Nissen redone. That is where they make the hole from the esophagus to the stomach smaller so that nothing comes up. She had this done when she was 3, so it is possible that it is time for it to be redone.
Seaira did very well during this test, the initial putting the tube up her nose was not very fun, but after that she did amazing!
The last few days her seizures have been under control and I pray it stays that way!
I hope everyone has a wonderful week!

Too much time has gone by AGAIN!!! :o(

2012-01-17T14:14:00.000-08:00

I have a goal this year, please help hold me to it! I want to post on here at least once a week! Right now there is a lot of little things going on with Seaira. She is going to have Esophageal pH study done to determine how much reflux she is having. We are thinking that her Nissin, that was done when she was 3, may need redone. For those of you who may not understand what that is feel free to ask and I will go into to more detail about what exactly a Nissin is. Her back seems be doing well and she is pretty straight with the rods in her back. She has a check up at Shriners at the beginning of February, if there is anything new to update I will do so then. She still is unable to sit up on her own.
She broke her Femur at the end of the last school year, in which I will never forgive myself for. She was in bed sleeping and the doors hadn't been closed, in my defense; I wasn't the one that had put her in it. But I was the one in the room with her. The mail had come and I walked outside to get it and on my way back in I heard her scream. :o( she landed with both legs underneath her. The left femur was broke and there was some muscle damage to the right! She is doing so much better now. The leg will never be perfectly straight but since she doesn't walk and has to be in a wheelchair for transporting and other activities, the leg had to be left with a slight bend in it as it healed.
She is still battling seizures, and I don't know that she will ever have complete relief from them.
We were very lucky to have Lisa's hours increased for the month of January. It was due to some law suit against the state of Washington. But February it goes back to normal, well she does get a 3 hour a month increase. We'll take what we can get! :o)
She hasn't been going to school due to her seizures and medicine changes!
I hope everyone is doing well!

Some of Seaira's Newest Pictures!

2011-03-06T15:14:00.000-08:00

:o)

2011-02-27T11:46:00.000-08:00

Hi Everybody! Again I have let too much time go by! Things right now are actually looking good with Seaira!
She is going to school 4 days a week and staying an hour longer for the most part, she still has some bad days but overall so much better then last year!
We now have Lisa as her care giver. She comes over everyday before school and gets her ready, yes all the cute hair-dos are from Lisa! :o) She also comes over two week days and ALL day Sunday. Seaira is really enjoying all the extra time with sissy and my back enjoys the break! :o)
Seaira's back is doing so much better since her surgery, she is even attempting to sit up on her own again!
Her Birthday is creeping up on us, she will be 13 this April. We are planning her party for April 23rd, so mark your calendars!
We are planning a trip soon too. Lisa, Seaira and I are going to go visit our friends Terri and Abby at the end of March. They live in Kansas City, MO, so it will be a long a plane ride, but I am really looking forward to it!
I think that is about all to report for now! Hope you all are doing well!

It's been way too long!

2010-04-08T00:34:00.000-07:00

I'm so sorry I haven't posted anything in so long! Seaira's back surgery really through me for a loop. It was harder then I ever dreamed it would be. She is still recovering from it, doing much better but each day carries it's own struggles. Seizures are still an issue and she was recently hospitalized for about a week because of it. "One day at a time sweet Jesus" is pretty much all I can say!!
I will try and do a better job at keeping up on this!
Seaira is going to be 12 at the end of the month for those of you who didn't get the info about her party and want to be included please let me know!!

2009-09-23T17:58:00.001-07:00

Ok, I warned everyone that October is approaching and it is Rett Syndrome Awareness month!
There are a couple things you can do that could benefit Seaira.
The International Rett Syndrome Foundation holds a fund raiser every October called Phantom Tea. Here's how it works..Message me privately your address and I send you an invitation. You drink a cup of Tea read a little info about Rett Syndrome and you have the option to mail in a donation on Seaira's behalf. Pretty Simple stuff! :o)
http://www.rettsyndrome.org/

If you want to do something more person for Seaira you can always visit her Kiddie Pool and make a donation that would go towards some much needed equipment for her. Now that she has had her back surgery and stands almost a head taller she has out grown her stander and her car seat, it would be AWESOME to get some help towards these items!
http://www.adaptivemall.com/seairah.html

Thank you all so much for the support you have shown Seaira and our family
Big Hugs~
Gail

Home and Healing~

2009-09-14T21:37:00.001-07:00

I know it's pretty nasty looking, but I thought everyone should see what it's like!

Look at her sitting up so big!!

Trying to rest!

Surgery Update~

2009-09-01T12:55:00.000-07:00

We had Seaira's pre-op yesterday at Shriners.
Her Surgery is September 8th at 7:30am at Shriners Hospital for Children
3101 SW Sam Jackson Park Rd, Portland, OR 97239 We will be checking September 7th at 6pm.
The surgery should take about 7 hours, so I will be hanging out in her room most of the day.One of my cousins is going to come hang out with me so I won't be alone. That Shel! From surgery she will go right over to Doernbecher's (excuse my spelling, that one always gets me) ICU where she will stay at least one night and as long as all goes well she will be moved back over to her room at Shriners. During her time in ICU, I will not have use of my cell phone or computer but once she is returned to Shriners I will be able to use both in the room but will probably have the ringer off on my phone so it won't disturb Seaira, so if I don't answer PLEASE leave a message and I will try and get back to you. If I understood things correctly we won't have a phone in the room to use, they made it sound like there was a payphone in the hall to use so I don't think people can call directly to the room, or maybe it's just that we can't call out on it, not sure though! Emailing me would be a great way to get a hold of me, you can do that Shipley_gaild@yahoo or Jasminsback4more@yahoo.com. And of course I will be checking Myspace and Facebook frequiently.
I was told that they will be putting one rod on each side of her spine with screws in the middle to "fuse" them together with goal of straightening it much more then it is now but it won't be perfectly straight. Her curve changed from 42 degrees from her last appt to 57 now, not good at all!
Lisa will be staying at the house to help out in any way I need, probably taking care of the boys more then anything, which makes me feel good, I hate that I won't be there when they come home from their first day of school.
Well I think that is about it for now!

Seaira's back surgery

2009-08-28T23:57:00.000-07:00

Well the day is approaching sooner then I may be ready for but it is time. Seaira's back surgery is going to be September 8th at Shriners hospital in Portland. She will actually check in the night before at 6:00pm. We will be there a minimum of 6 days. Her pre-0p is August 31st at 1:30, I find out more details at that time. If anyone is wanting to come up and visit I will make sure I post the address along with the updates on the 31st.

Seaira's new bed!

2009-08-28T23:41:00.000-07:00

Seaira got a new bed built for recently. My cousins husband designed and built it and it is awesome!
He put heart and soul into it. He went around telling people about Seaira and Rett Syndrome and got several donations along with making a very generous one himself.
So here a shout out to my cousin Shelby and her husband Rod, thank you both so much for being so thoughtful and caring, we love you both very much!!

If you are interested in one like this or need any other wood work done, here is the info.
The Woodtics Corporation
22645 S Stormer Rd.
Estacada, OR 97023
503-880-7945 fax 1 866-440-6739
Rod Blake
http://www.woodtics.com

Updates-Sorry it's been so long-

2009-07-30T22:30:00.000-07:00

Seaira swinging at Fort Nugent Park in Oak Harbor, she really enjoyed this!

So many things to talk about! Most important..Seaira is doing very well right now. She is averaging about one seizure a day, they aren't real big ones. We have adjusted meds to try and fix this but it's just not helping. Her health has been good, her mood has been good, I can't ask for much more then that!
Seaira, my niece LaRae and I took a trip to Oak Harbor to house sit for my mom, we were there for 5 days and had a great time. We went to the beach a couple of times, took a boat ride around Deception Pass, and went to the park. Seaira seemed to really enjoy herself other then the boat ride, I'm not exactly sure what her thoughts were on that but she didn't look to thrilled about.
I don't think she ever looked up! :o(
Seaira made it to a few of her summer therapy sessions which was much better then last year she seemed to really enjoy her time with Sue and Laurie!
She seems to be staying cool enough in this insane heat we are having. We have A/C in one room and we try and stay in it!
Seaira's back surgery has been scheduled for Sept 8th up at Shriners, she will be in the hospital a minimum of 6 days and then bed rest for 6 weeks. I'm not worried about our time in hospital as much as I am when we get home, it will interesting to see how it all will work out, I may need some help from our friends and family during this time!
I think that is about it for now!

Seaira 11th Birthday~

2009-05-04T21:55:00.000-07:00

We had a great turn out for Seaira's Party! I want to thank everyone who came to help us celebrate! Seaira had a rough time making it through her party though. The night before she had been throwing up and had a bad seizure then the morning of she had another one. We couldn't take her in the pool in fear she might have another one. :o(
It was wonderful to be surrounded by family friends though!
Seaira has been sick every sence her party but she is starting to feel a little better.

Seaira's OBG appointment

2009-05-04T21:43:00.000-07:00

Last week I went to talk to Dr. Lee about Seaira's uncontrollable periods. After carefully weighing out each of my options I have decided to go ahead and try the depo provera. Not my first choice but right now I just don't have too many options! I just pray it helps!!

The Tobii~

2009-04-14T16:38:00.001-07:00

Seaira had a lot of fun trying out the Tobii! It cost an arm and a leg,but who knows, maybe someday we'll get it!!

Easter

2009-04-14T16:32:00.000-07:00

Seaira had a very good Easter! We went to my in-laws for lunch and then came back home and hunted for eggs, had snacks and played games my sister and her gang! Lisa came over for about an hour or so and hung out with us!

The Van!!!!!!!!

2009-03-11T18:36:00.000-07:00

Ok, sorry for the delay in writing! We got the van and the end of February when we got our taxes back which also made it to where we could get back on our feet again financially which was a great feeling!
The van has a few little things that bother me about it but over all it is pretty nice!
Here are some pics!.................

Pretty Cool Stuff!

2009-02-18T23:28:00.000-08:00

Here is Seaira's new Tomato Seating System! I love it!!!

Seizure Day!

2009-02-11T19:49:00.000-08:00

Seaira woke up having a seizure things were calm for a while and this evening they started back up and haven't stopped! I've had to give her emergency medicine. She having little ones but they are one after the another!
Her brand new feeding pump I was bragging about decided to go out today of all days, for some reason the battery isn't charging, we tried moving it to different outlets and everything but it's not working so I called Apria and they can't get here until Midnight, I guess it's better then tomorrow!

Here is the van we are getting!

Here is the fancy new feeding pump that is not feeling so fancy at the moment!

Not a lot to report!

2009-02-10T05:46:00.000-08:00

Things have been all right. Seaira did have another period on her 2nd week of her new pills which brought on another round of seizures. I'm not sure if I should call her OB, or if I should just wait it out and see what happens since things sometimes take time to work??
Seaira's feeding pump went out over the weekend and we got a new one delivered yesterday, it's called a Joey, wow, where has this thing been all the life, it is much nicer then what we have been using for the last 6 years! I'll try and remember to get some pictures of it later so you all can see!
A couple of weekends ago we (Jeff, Lisa, her brother and I) rearranged mine and Seaira's room!
The goal was to get her back in her bed but still have her close enough to me that I could see her while lying in my bed and be able to get to her quickly! I think we accomplished that!
Here are all the pics!

These are at the end of her bed and she is using them, it's really nice for her to tell us when she needs something!!

OBG Appt

2009-01-27T21:48:00.000-08:00

First I just want to take a quick second to thank everyone who checks up on Seaira. I read all the comments and I wish I knew how to "reply" back to say Thank You to each of you!

Seaira saw Dr Lee up to OHSU today, he is not only a pediatric specialist but a Fertility specialist as well and we got a lot of funny looks sitting out in the lobby because is just says Fertility Clinic, but anyway. Dr Lee was wonderful! He discussed every option possible on how to best handle her period. My main concern was the increase in seizures that her cycle was bringing on and the how heavy the flow was.
I was very curious about a hysterectomy because I was hoping to just go in a take care of it all and never have to worry about it again, but Dr Lee said that would only stop the bleeding and that isn't what is causing the increase in seizures it's the hormones! Also it is actually against the law to perform a hysterectomy on a person whom can't decide for themselves but in a situation like Seaira's a court order can be given and it can happen and he said that she ends up having major bleeding issue in the future that he would be happy to address it then!
So we decided to put her on Nor-DQ, it seems to be the best choice for her and is safe for to take for a long period of time!

Well lets see....

2009-01-27T05:45:00.000-08:00

Hey everyone, nothing major to post. Seaira has had a little cold which brought on more seizures, pretty normal for this to happen and the seizures weren't too bad.

She has her appointment up at OHSU with the OBGYN today, wish me look on this! not exactly sure what we are going to be able to do for her but I hope it's something!

I talked to her school and her doctor and have decided I am going to do what they call "Home Tutor" for her. She will still be enrolled in the school district but due to her health issues doesn't have to go to school. I think the school is actually suppose to send a tutor out but I am trying to make it so that I can just keep in touch with her teacher about things but I do want to find a way to continue her Physical Therapy so we'll see how that goes! This my solution for the school not wanting to hire a staff assistant for her, I just don't have the energy to fight this battle right now and they are right her attendance is an issue!

Well the first day my mom put her house up for sale it sold. She went to Oak Harbor this last weekend and found a house and will purchasing it! She's leaving on the 13th of February. I'm not ready for this. I've always been very close with my mom. :o(
I'm not sure what exact date Lisa is leaving but she said in February. I had to laugh the other day, Damien and Cody were talking and they had everything planned out about who was moving into Lisa's room. I had to burst their little bubble because it is neither of them. I hate trying to plan what is going to happen with her room because I don't want her to go BUT when it does happen her room is going to become Jeff's room and I have to say I'm a little bit excited about that!
Well I think that is it for now.........

Latest updates and BS....

2009-01-23T11:18:00.000-08:00

I don't know where to begin! I'm kind of losing my mind right now and I'm overly emotional so please bare with me! The very first thing is Lisa, my 20 year old, is getting ready to venture out on her own next month and is moving out! This is wonderful for her, it's a positive growing experience for her and I am so happy for her and proud of her BUT I can't help but be very devastated at the same time because my daily life is going to change in a way I'm not ready for! Caring for Seaira is a very big job that I can't do on my own and Lisa has a very big part helping with this. I keep trying to remind myself that I did it by myself before she came here but that was 5 years ago and Seaira is about 30 pounds heavier now! I'm not suppose to lift more then 10 pounds and Seaira is 75 pounds! Anytime I've thrown my back out, had surgeries, or have been sick, Lisa has been right there taking care of me and everything else! She has spoiled me! I'm now dreading the day that I get a bad cold and need to rest, if I ask my husband for something as simple as a glass of water I get glared at and treated like crap!
On top of Lisa leaving my mother is also moving away next month, she's going to Oak Harbor Washington which is 5 hours away! I have no idea what I will do if I have a emergency in the middle of the night! I have no one with a car that I can call to come be with kids if I have to take Seaira in. I feel like someone has just dropped a ton of bricks on my head!
Next is Seaira's school, I don't know if you recall all the problems I was having with her getting a one on one staff assistant, well it never happened and it continues to be a fight! The school district is now saying that there is a enough staff in her class to take care of her needs without them needing to hire someone which is such BS. They are saying she can have several different people assigned to her through out her day instead of just one! I do not have the strength to fight this battle any more and I'm seriously considering pulling her out of school! I can't take this anymore! They promised me a one on one and they promised me it was going on her IEP and none of it has happened!
Next is Seaira's surgery, it is looking like it might be as long as a year, that is how backed up the surgeon is BUT we could get a call anytime if there is a cancellation. I was told that not many people can come in on short notice because of the length of time the child has to be in the hospital and recovery time, most families have to plan ahead for this kind of thing, but I'm a stay home mom and Jeff can call off from work easily for us this kind of thing! I'll be scared to see what my house might look like after me being in the hospital a week with Seaira but that is my only concern! Anywho, they typically have some cancellations during the winter so I am hopeful that we might be able to get this done and over with sooner then later!
Thanks for listening!

Boo Hoo

2009-01-19T19:39:00.000-08:00

Anytime things start looking up the damn seizures creep up! They started last night and I woke up to them this morning! She has been sleeping ALL DAY! :o(
It's going to be a long night!!!!!!!!
Please keep my baby girl your prayers! Thank you everybody!

A good day at school!

2009-01-16T19:00:00.000-08:00

Seaira went back to school for the first time in a while and she had such a good! She was getting tired toward the end but she managed to not fall asleep! I brought her home and she slept from 12:30 until 6:30, I think I'm going to be up all night!

2009-01-15T15:31:00.001-08:00

Seaira had her check up this morning at Shriners and it didn’t go so well! Surgery is the next step! He’s booked 2 to 3 months out but if there are any cancellations Seaira will be called in since we live so close! I’m trying to be strong here but I did watch one of these surgeries go wrong and I can’t seem to get that out of my mind!
She’ll be in the hospital for 1 week and bed ridden for 3 to 4 weeks after that!
I’ll let you know the exact date when I find out!
Thanks

Everythings fine!

2009-01-05T00:33:00.000-08:00

This what I did with her MP3 player so that she could watch the videos with out it falling all over the place, I got the box on an after Christmas clearance rack for $4.00, good find!
Seaira's beautiful angel from Stacy!
With this switch Seaira can turn off and on her Monkey and her CD Player!
Seaira with her monkey that places music, she was jamming out!

Here's Seaira with her cute elephant ear phones!

Things have been going fairly well this last couple of weeks, not perfect by any means but doable! I'm hoping to take her back to school in the morning but it's already almost 1am and she is wide awake so we'll see!

Little Miss Sunshine!

2008-12-18T09:25:00.000-08:00

I'm so sorry it's been so long since I've posted! As anyone close to me knows, when things are bad I just fall into a little hole and shut out the world (so to speak). There have been no positive changes to report! Things were getting better with the seizures and then her period came. She had 5 seizures the day before and then again the day it started and 2 the next day then 1 each day after until it ended (5 days total), these seizures were each 2 and half minutes long, just awful ones! Now that is has stopped the seizures have stopped as well but she is so drugged up that she just lays in bed all day long. It is getting very depressing! She was suppose have a neuro appointment today but we had to reschedule do to the weather!
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!

Meds update!

2008-11-26T01:02:00.000-08:00

I haven't written much this last week, mainly because I've been going crazy watching Seaira suffer in so many ways!
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!

Thank you!

Mini Miracles........

2008-11-26T00:46:00.000-08:00

http://www.minimiracles.ca/

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!

Here's the 411........

2008-11-17T19:26:00.000-08:00

Very first and most important, I wanted to let you all know that Tatum, the girl Seaira went to school with, passed away. Please keep her family in your prayers!

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!

The latest!

2008-11-17T00:13:00.000-08:00

Not much has changed here! She had one full day with no seizures and then they started right back up again! They seem be happening around 11pm to 1am and they are clusters that just don't want to stop until she is given her diastat! Then she spends the next day sleeping! :o(
I don't know what to do!

They never EVER end!

2008-11-09T15:07:00.000-08:00

Seaira and Aunt Nonna (Rhonda)

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

Not working!

2008-11-06T07:00:00.000-08:00

Things were going good, but the seizures are back! I must say that this time when I swipe the magnet across the VNS it is lessening the severity of the seizure which is good to see but they are happening none the less! I hate this! I think I'll give it another day or two before I change anything with the meds because they are so mild right now and maybe her body is just adjusting to the change???

Halloween and updates

2008-11-04T09:12:00.000-08:00

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! =)

More Pics

2008-10-26T01:32:00.000-07:00

Pumpkin Pics

2008-10-26T01:28:00.000-07:00

Add Glitter to Pictures

Slacking on Updates

2008-10-26T01:18:00.000-07:00

With all the craziness in my life I haven't posted as much as I should about my little angel!
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)

Don't Forget

2008-10-24T22:39:00.001-07:00

Glitter Graphics

Prayer Request

2008-10-23T19:03:00.000-07:00

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!
Thanks

Awwww, so sweet!

2008-10-19T19:27:00.000-07:00

My friend Leanne posted this on my Myspace and since the ladies mentioned are not on Myspace I thought I'd post it on here so they could see!!
***************

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

****************

My Cup Runnith Over~

2008-10-18T18:58:00.000-07:00

You know the old saying "what comes around goes around"? Well today I got to see that first hand! I have always been one to help out friends, family and even people who I didn't directly know if I heard there was a need, I've just always been that way! Well as most of you know my family has been struggling and things were getting really bad, I was not sure at all how I was going to come out of it and still have a place to live etc... Well Seaira's class heard about our situation and helped out in such a special way! We now have food to last for a month and I'll gas to put in the van!
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!!!!!!!!

MyHotComments

I can breath for a moment!

2008-10-17T17:45:00.000-07:00

With the help of a wonderful person I got payment arrangements worked out with the PUD, ones I think I can live with! There is one battle done, on to the next one!!!
PS
Katie, your awesome, thanks for ALL the help!

:o)

2008-10-17T09:32:00.000-07:00

Fever is gone cough is still bad! She woke me up at 3:00am coughing, I got up and got her some more cold medicine and I don't think it calmed down until 7:00am, I'm beat!

The Halloween Spirit

2008-10-16T22:12:00.001-07:00

Just wanted to show Anna that we put them to good use!!

Special Thanks!

2008-10-15T15:04:00.000-07:00

I just wanted to say thank you to Anna for bringing by all the Halloween decorations for the kids!
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!!

MyHotComments

Seizure Danger!

2008-10-15T14:17:00.000-07:00

I just wanted to let everyone know Seaira's cold has got worse and she now has a low grade fever which tends to bring on seizures! So far so good, but it's hard to say what the day will bring!
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!

Don't Forget!!!

2008-10-14T10:34:00.000-07:00

Life is Crazy!

2008-10-14T09:42:00.000-07:00

Right now Seaira has a cold, nothing to big, just a cough. Seizures are under control for now, hopefully the cold won't egg them on! She see's her neuro on the 30th and at this point it seems like we're going to have to keep her on all 4 meds! :o( We'll see if he wants to change anything but I doubt it!
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!

Someday, somehow, someway...Please!

2008-10-03T00:16:00.000-07:00

Grrrrrrrrrrrrrrrr Grrrrrrrrrrrrrrrrr and Grrrrrrrrrrrrrrrrrr

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!
Thanks!

Neuro Appt

2008-09-30T12:27:00.001-07:00

Seaira saw her neurologist today! He increased the settings on her Vegal Nerve Stimulator and we are going to try to slowly decrease her Kepra (that is the one that make her wobbly) but just by a 1/2 of a ml at a time, with the hope of getting her off of it completely but it could take months!
Everything is looking good!!
Thanks,
Gail

OOPS~

2008-09-26T21:24:00.000-07:00

I just want to clarify......I was in no way trying to put down the staff members in Seaira's class, it is not their fault in anyway that things happened the way they did, I was just stating that it really bothered Seaira to watch all of her old staff assistance's being with new or newer kids. It happened the way it did and there is nothing I can do to change it but it SUCKS none the less! And I feel really bad about stating that I thought the sub wasn't "all there" but when it comes to someone working with my child I want to feel like they can do the job, and with that one women I have doubts and weird feelings about her and I won't leave Seaira with anyone unless I feel 100% sure about them and their ability to care for her!
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!

Having a bad day!

2008-09-25T11:26:00.001-07:00

I have so much stuff going on I don't even know where to start! Warning-I'm overly emotional right now!
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!!!!!!!!!!

A couple of cute pics!

2008-09-22T12:45:00.000-07:00

Thank you Stacy for the cute pictures!!

At little slow on updates, sorry!

2008-09-20T01:01:00.000-07:00

Seaira had an appointment at Shriners on Thursday to have her back rechecked
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!
Thanks,
Gail

October is Rett Syndrome Awareness Month!

2008-09-16T19:37:00.000-07:00

Ok October is soon approaching and it is national Rett Syndrome Awareness month!
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!
Thank you,
Gail and Seaira

Another day at school

2008-09-16T15:07:00.000-07:00

Seaira went to school again today and she did alright with the exception of some gas pains. She stayed about an hour and a half and then we went home! I'm starting her off slow while she is on all these medications. She came home and slept for hours!
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!

School

2008-09-15T17:19:00.001-07:00

I took Seaira to school today, she didn't last too long but at least she went! She got to meet her new staff assistant, Daphni, she seems really nice! And she also got to see her Physicals therapists Julie and Sue, that made her really happy! I talked to her neuro's nurse today and she said to try decreasing one of her meds but just by a small amount so that maybe she won't be so tired so we will try that tonight!

One Good Week

2008-09-12T23:04:00.000-07:00

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!!

Sept, 12, 2008

2008-09-12T10:20:00.000-07:00

I wish I had some real news to report but all I can say is I've been spending the last two days watching my daughter sleep. She had 2 seizures yesterday and was never awake for more the 10 minutes at a time! This morning I waited until the last possible minute to give her medicine to her so I could enjoy a little bit of awake time but she still was pretty out of it!
Is this as good as it gets???????????

Seizures~

2008-09-10T13:45:00.000-07:00

She just had 10 in a row, we gave her the emergency meds and praying they work! I'm also putting a call into to her neuro right now to see if there's anything else he wants me to do! I'll keep ya all posted!!!

We just got home from the hospital.
She had about 15-20 more while we were there, little ones, but still! They increased her emergency medication gave us another and sent us on our way! When Lisa got her out of the car to bring her in she wasn't breathing! It's going to be a long night!!!
Hey everyone! Thank you so much for all your love and support!

It's 1:30 right now and Seaira has not been awake for more than 5 minutes at a time today.
She has had at least 7 seizures today and I have given her the emergency meds! I'm really starting to loose it here, kinda feeling like this is going to be as good as it gets, like I'm just going to have a drugged up child from now on!
I just want my baby girl back, I want to see her smiles and hear her laughter!

Update

2008-09-03T21:19:00.001-07:00

A couple of hours before her appt today she ended up having 8 more seizures.

Her neuro isn't quite sure what is going on and we've increased one of her meds and has given me another to use if the increase doesn't work!
That will be 4 medicines plus the vegal nerve stimulator. So she'll pretty much be a zombie for while! :o( No real answers no real solutions.

More seizures

2008-09-02T14:10:00.001-07:00

I've been procrastinating all day about posting this because I know I'll probably cry but......... Last night Seaira had 13 seizures in a row (a cluster) we ended up having to give her diastat (her emergency medicine) at around midnight and that helped and she was able to sleep peacefully the rest of the night, wish I could have but at least she did! I called the advise nurse when this all started and she was really sweet and called me through out the night to make sure things were ok, she also made sure that Seaira's neurology office got a report first thing this morning about what happened and they called me. They are wanting to give her a form of Valium that should settle things down until we figure things out! Her neuro is out of town but flies back tomorrow and is going to see right after his flight comes in which I thought was really sweet! So tomorrow at 2:00.
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!
Thanks,
Gail

School

2008-08-28T16:57:00.001-07:00

I am so peeved right now I can't even see straight! I just found out Seaira is not assigned a one on one staff assistant this year. I'm told it has something to do with some paper work not being turned in on time(not paperwork I am responsible either) , but I don't buy that for one minute!
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!!

Damn Seizures!

2008-08-25T22:39:00.001-07:00

Now that the surgery is done and her VNS has been turned back on and we think we can start decreasing the medication that is making her to sit up very well on her own....She starts having seizures again! Two right in a row! Sometimes it's just so hard to sit and watch and not be able to do a damn thing about it! My heart hurts so bad right now!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Neuro Update!

2008-08-22T16:15:00.000-07:00

Seaira had her appt today and her VNS got put back to the settings it use to be and we are slowly decreasing her Kepra and hopefully will be able to take her off of it. Her neuro will be seeing her once a month until everything is back to normal!

Doctors Appt.

2008-08-19T23:10:00.000-07:00

Seaira went in on Monday and saw the surgeon to have her incision rechecked . They still say it looks just fine to them, I guess I need my eyes rechecked because I still think it looks horrible but I guess if the doctors aren't worried about it that I shouldn't be?????
She goes in on Friday to her the VNS programmed to the right settings!
She has been doing really well and seizure free!!

Little Miss Seaira LaNae Nae!

2008-08-15T13:01:00.000-07:00

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

Pictures of her boo boo

2008-08-08T12:03:00.000-07:00

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!"***

Little Miss Sunshine!

2008-08-05T17:43:00.000-07:00

Hey everybody! Seaira has had an interesting day so far! She is still resting quite a bit but we did have to take a trip back up to Dorenbecher's today. I had caught Seaira scratching at her incision so I take a look at it and I could tell it had been bleeding more so I called the advice nurse and she had me take off the bandage and that it was when I noticed the stitches were coming out. So we went up and they put some steri-strips over it and covered it back up! I'm still having one heck of a time keeping her hands off the incision but I'm doing the best I can!
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!
Thanks everybody!

Seaira's home!

2008-08-04T20:52:00.000-07:00

We finally got home around 8:00pm tonight! She is sleeping soundly at the moment!
Thank you all so much for you prayers, love and support!!

Hugs~Gail

Surgery Update

2008-08-04T15:54:00.000-07:00

Because of a family emergency of the surgeons Seaira didn't go in until 3:30pm, I'll let you know how things go just as soon as I can!!
Thanks,
Gail

Change in time for surgery!

2008-08-03T01:17:00.000-07:00

Seaira's surgery is now scheduled for 9:00am instead of 7:00am!
I'll post as soon as I can afterwards!
Thanks!

Things are still good!

2008-08-01T09:32:00.000-07:00

Just a quick not to let everyone know that things are still going smooth! Surgery is Monday at 7:00am up at Dorenbecher's, remember I won't know until they've started the surgery if she will be staying the night or going home. We're hoping for the best preparing for the worse! I will make sure to post ASAP to let everyone know what is going on! The surgery will anywhere from 1 to 5 hours depending on whether or not they have to change out the wires in her neck!!

Bathroom Remodel!

2008-07-28T15:32:00.000-07:00

Ok, I'm sure most of you remember all the drama about the remodel of our bathroom and how Seaira's case worker said they were going to cover only 1/5 of it and all that garbage!
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!!

Update~~

2008-07-27T20:32:00.000-07:00

I thought I should give everyone a quick update on my little angel!
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!
Thanks,
Gail

Thank You Carrie!

2008-07-23T14:57:00.000-07:00

Ok, I just had a little help figuring out how to make it so that "everyone" can leave comments!
Let us know how it works!!

Thanks,
Gail

Update on Seaira's appt

2008-07-23T14:48:00.000-07:00

We had what was suppose to be her pre-op this morning, we talked to the surgeon and the surgery to have her Vegal Nerve Stimulator replaced is going to be Aug 4th up at Dorenbecher 's Children's Hospital. This the soonest they can do it. They will go in and replace the device, hook up to the wires in her neck (should take about an hour) and as long as it's working then she can come home that day, but if something has gone wrong with the wire then another incision will be made on her neck and surgery will be another 4 hours and she will have to stay the night, and I won't know until that moment!
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!

Just a quick update!

2008-07-21T05:59:00.000-07:00

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!

Day 5 of seizures...ughhhhhhh

2008-07-14T22:18:00.001-07:00

We're going on day 5 now and they are not getting any better! I totally thought today was going to be a good day, nothing happened until 4:25pm. She's had a totally of 10 since then! :o( Her appointment with the neuro isn't until Wednesday at 1:00, this sucks!!!!!!!!!

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!

Update on Seizures

2008-07-12T08:38:00.001-07:00

Thank you all so much for the positive thoughts and prayers!

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(

Seizures.....Grrrrrr........

2008-07-11T17:14:00.000-07:00

Just when I think things are better, they aren't! Yesterday the 10th Seaira ended up having 5 seizures and so far today 3, I spoke with her neuro today and we had us give her diastat and tranzeen she's sleeping peaceful now. If these meds don't do the trick I need to take her in. He wants to check on her Vegal Nerve Stimulator too so he will be personally seeing her Monday or Tuesday!

Pictures from Physical Therapy

2008-07-11T16:48:00.001-07:00

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.....

Sometimes no news is good news!

2008-07-08T21:40:00.000-07:00

Things have been going good for Miss Seaira! Monday she had her first summer time PT session which went really well, Damien came with us and he had lots of fun helping sissy with therapy. She has another one tomorrow and I'll make sure to bring my camera this time!
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!

My Birthday

2008-07-01T06:39:00.000-07:00

Well yesterday over all was a pretty good day for my baby girl! She started out real happy because she saw me leave with Zack, I had to take him to day care and when I came home she was all smiles! I ended up having a rough afternoon and I lied down with her and just cried and she was being was sweet, she kept patting me with her hand. Later she noticed Zack returned and she was back to glaring at him. When I was trying to put him down for bed Seaira hopped over to the bed was slapping my leg so I brought her up on the bed too and what does she do but glare at the poor little guy again. I keep trying to tell her we're not keeping him but it's not working yet!
She's so silly!

Decent Day!

2008-06-29T21:48:00.000-07:00

Today was overall a good day for Miss Seaira! The weather is a bit warm and she is a lot like her mommy and melts in the heat so we pretty much stayed in the one room in the house with a/c and watched movies. She isn't liking our new guest very well. It's quite funny, I don't think I've ever seen Seaira get so jealous over a child I've taken in but she doesn't like poor like Zack. She glares at him, she even went as far as trying to pick up his toys and throwing them but her hands just weren't cooperating with her but you could see the evil in her eyes. I guess it's a good thing he's only staying for a short time!
I hope everyone had a wonderful day!

Rett Syndrome

2008-06-29T14:53:00.000-07:00

What is Rett syndrome?

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