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Monday, August 23, 2010 11:28 PM EST

Today was Amber's first full day of school. I had to work all day, so daddy had to get her ready. Then her sisters had to get her off the bus. We all forgot (I usually call and remind them) so I guess the bus was sitting out there, not too long. LOL! So we are starting to get back into the swing of things. Amber seems very happy and hopefully is doing well at school. I am trying to have a positive outlook on things. I am off work tomorrow so I hope to pop in and visit. I did get a letter home from the teacher (addressed to all parents) that I felt was informative and heartfelt. If nothing else, I know Amber is not being pushed too hard or being abused in any way. I think she is with good people and that accounts for alot.

Tonight I went to a home party that had alot of purses and bags. I ordered some really cute stuff for Amber. I decided to use some of her birthday money instead of putting it into the bank. I got her a container to put her stuff in on her changing table, a container for the van to hold extra diapers, clothes, etc., a bag for her communication board and a book bag. They all will have her name embroidered on them and are adorable. I will post pictures! Seriously, I will! Do you doubt me??!

Sunday, August 22, 2010 6:58 PM EST

Yesterday three of my girls were in two parades twirling baton. By the time we got to the second one it was raining. It continued to rain the entire time. Towards the end I decided it was time to head back to the car and meet up with my girls later. A friend was going to get them back to me. By this time Amber was whining. We must have been a sight running through the rain. We had no umbrella and were soaked! We had quite aways to walk and had to dodge people that were watching the parade. Amber's teacher saw us (what a surprise!) and walked with us the rest of the way back to the van. It was fun as crazy as that sounds!

Once I got her in the van I was able to strip her down, get her shoes and socks off (I literally dumped water out of her shoes) and dried her off. She was giggling and laughing by this time. I buckled her in a seat in the van and we found the girls.

On the way home we got chinese and stayed home for the evening. It was kindof neat that Amber got to have a little adventure, but she certainly didn't like getting THAT wet, although she was a real trouper!

Thursday, August 19, 2010 10:02 AM EST

I am overwhelmed at the kind words people have said to me about helping to win Amber a bed. If you don't know what I am talking about, read my previous post about the bed.

Do you ever wonder what people think of you? Sometimes I wonder what people think about our family and the whole Amber situation. And then I hear comments from others and I am blown away. I certainly don't feel like I do all that well for Amber. I try, but I can be quite the slacker sometimes. For instance, we go see the doctors in Chicago the first weekend in November. Well, I think Amber was supposed to start taking Vitamin K and I tried to get a script and then we switched doctors and then I forgot....so now I can picture me sitting in front of the doctor in Chicago and telling her I never did what I was told to do a year ago. I am going to try getting her on the Vitamin K before November! Just one of the many things on my "to do" list. And then I need to get her tested for Long QT. It is a heart problem Rett girls can have. Some never do the test. Some don't want to prolong their daughter's life. I understand. Only other Rett parents could understand this. (I think.) And then I am also supposed to get her an appointment for scoliosis and have her back checked out. Haven't done it. We do have an appointment with the neurologist next month and I hope to get a bunch of scripts and referrals from him. So see why I don't feel like I do right by her. It is never-ending. Sometimes I'm just trying to get through the day and keep her happy, which has become more and more of a challenge lately.

Oh, and yesterday when changing her she seemed very bothered by her left knee area. I am wondering what is going on with that. She could have a fracture and we would never know. So I am thinking I have to take her to get an x-ray. Ugh! I am hoping it will just go away!

Amber started school today. I will probably get her before the day is over because I think it is going to get too hot in the classroom. Hopefully this will be a better year!

Thanks all for entering to win a bed! We so appreciate it! www.sleepsafebed.com

Tuesday, August 17, 2010 8:20 AM EST

So I had these cards made up to hand out to people to enter the SleepSafe Bed drawing. It says Win a Bed for Amber Please!!!!!!
Go to www.sleepsafebed.com Click on top right corner to enter. Only one entry per physical address. Bed ships to you & we pick up. Thank you!!!!!!! www.caringbridge.org/oh/amberheiss

I have been trying to win this bed for over a year. There are four drawings per year. (one each quarter). Another Rett mom that I had met at a Rett conference won it last quarter. She told me to tell everyone I know to enter. She said her mom won the bed for her. She said the Sleep Safe Bed people said the most they have ever had enter in one quarter is 200 people!!!!!!!!! So we can do this!! I think there is a GREAT CHANCE WE CAN WIN! Currently Amber sleeps on a mattress on our living room floor. It is too much to take her up and down steps every night and morning so we keep her downstairs with a video monitor. Amber is not able to have anything but this bed. (Unless there is a bed out there that is comparable, but I have never seen one.) She can't have a hospital bed with railings as she could get caught in the railings.

So I hope you can enter. It is sooo easy and I haven't seen any spam emails because of doing this. Please....don't enter if you live far far away. The bed would be delivered to your address, and only your address, and we have to go pick it up. The bed is worth $8500. Crazy, I know! Welcome to our world. The price is jacked up for everything.

Please only enter one time per quarter. They watch this closely. And it is only one person per address. Not email address, but your physical address.

I still am applying for this bed through her Ohio home care program. We have a hearing September 2. I am told there is no chance they fund for beds, but I am certainly going to put up a good fight.

I am determined to get this bed for her. It is such an important part of her life. She needs to be comfortable when she sleeps and it will be nice for her to lay on when watching tv. Such a large part of her life will be spent in this bed and it will last into adulthood.

Thanks for your help friends!!

Tuesday, August 11, 2010 9:20 PM EST

We were told Amber was denied going to PPC. I got a call a couple weeks ago from her caseworker. She said she doesn't know why it would be denied and that Amber needs to stop going. I sent her anyway. I knew something couldn't be right. Yesterday I got a letter stating she was indeed denied because it wasn't a medical necessity. It stated she was denied ever going, dating back to June 1. So I made a call to the name on the letter. She stated our caseworker never filed what ever it was she was supposed to file....nice. Anyway, all is well. While I had her on the phone, I asked her about the bed and is that the same thing that happened with us getting denied a bed. But no such luck. She said definitely appeal it and if we get denied we can file for an Administrative Appeal. So that was a productive phone call!

Amber is back to normal and doing much better. She finally pooped. The shaking is completely gone. I have no idea how or why. I do feel the seizure medicine may help calm her. That's all I can come up with, but she has been on that medicine for a few months.

I will have to tell you more about the bed next posting, but please if you have a chance, go to www.sleepsafebed.com and enter to win it IF you live somewhat near us. And then you can give it to Amber if you win!

Thanks!

Sunday, August 8, 2010 1:59 AM EST

Today is Amber's 9th birthday. She was up most of the night laughing. That's right, laughing. I think she may have fallen asleep about 4am. We went to church this morning and she was very happy and different. No one noticed, but I knew something was brewing. By 11am she was crying HARD. This was different. She might have been in pain, but there was more. She looked as if she were scared. She had many tears and when she calmed down a little, then she was sobbing. It was pitiful and for a few moments I started panicking. We laid her on a table, took her shoes off and gave her some calming medicine. Thank goodness I had it with me!!! She still cried after that, but it wasn't as intense.

On the way home I sat in the back of the van while she laid down and slept. She is now in her bed and has been sleeping ever since.

We had plans of getting her hair cut, taking her swimming, having some of her favorite foods and having cake. Now I just hope she sleeps the day away.

In the midst of crying, someone at church had run out to get her balloons. When she saw them, she actually smiled. She loved them. But then she started crying again. They are right by her bed so she can see them when she wakes up.

I really don't know what is going on. Amber's body is going through changes and I imagine she has some mental issues with that. You know how moody teenagers can be. Well, I think Amber will/is going through puberty early. She will probably have PMS something fierce!

If you would, please take a moment and register to win a Sleep Safe Bed at www.sleepsafebed.com IF you live near us. I will provide more details about this in my next posting. We have a great chance of winning this bed with everyone's help. Please, only one entry per physical address.

I am feeling especially tender and protective of Amber today. This isn't how I expected her to spend her birthday.

Saturday, July 31, 2010 9:33 AM EST

Amber has been...different lately. She cries or whines sometimes and as soon as I hold her, she seems to do much better. I have only known her to cry when in pain, but lately I am wondering if she is just bored or just wants me. She did have a couple days of not pooping and that seemed to upset her. BUT the shaking is completely gone. All I can say is the less she poops, the less she shakes. The less medicine I give her for pooping, the less she shakes. I am wondering if the Senna that I was giving her every day was possibly depleting her body of some vitamins/minerals. I have no clue what I am talking about. Just guessing as usual.

So it sure is nice to not have her shaking. She will be starting school in August. I am not looking forward to it. Hopefully all goes well.

Not much else going on here.

Saturday, July 24, 2010 9:28 AM EST

I am so far behind on everything. There are appointments and calls and things I want to buy Amber. I am trying to get to everything. Amazon.com is amazing. I ordered a digital recorder. I am going to put it in Amber's diaper bag for her ride to PPC. Some of the drivers are just plain old creepy to me. It can't hurt, right? I found a chair for in the pool that I am thinking of ordering also.

I got a call yesterday that she has been denied by insurance to go to PPC effective 7/22. I'm not too worried about it. Our caseworker is a little mental and doesn't seem to know what is going on half the time. It doesn't really make sense and even PPC says a child on Medicaid AND having a waiver most certainly is eligible. Also, her last speech therapy was yesterday. That was a complete waste of time. Now we are supposed to wait for approval, which I don't even want so I haven't made any calls.

I need to make appointments for a specialist to look at her back for scoliosis. We believe it is getting worse, which is no surprise.

I was waiting for approval for BCMH, which will help her go to the dentist we want to go to and possibly getting the bed we want. I filled out the paperwork and returned it to our doctor in their envelope and then waited. When I called a few weeks later to check, they claim they never received it. So they were sending out another form. Well, guess what....I never got the form. So now I have to call again.

We ordered a chair for Amber for in the house. If I was prepared I might post these websites....along with some pictures periodically. But it's all I can do to even blog. So sorry, this is as good as it gets for now. :)

Thursday, July 15, 2010 9:09 AM EST

Amber is doing great!! We went camping over the weekend. She had a blast. She loved sitting out by the fire and watching all the craziness with all the kids. We took her down to the beach. She went swimming twice and had an absolute blast! We got to borrow Grandma's Heiss' trailer and we were able to keep her cool in it. It worked out great!

Amber hasn't been shaking too much for two days now and no medicine! I just don't get it. I could guess at what we are doing different, but as soon as I say something, she'll start up. So I'll just be happy with the way things are.

While selling flowers on Tuesday, one of our regular customers and I were talking. She knew we had Amber and I told her she goes to day care three days a week. After talking some more, we figure out that her daughter works at PPC. Later, on my way to work, I call to check on Amber, and come to find out that lady's daughter was taking care of Amber that day!!!! Small world!!

I have ordered a special chair with wheels on it. We will keep it in the house and it will make it easier to feed her and sit her in it for tv, etc. It gives her alot of support. It's not a wheelchair, but is lower to the ground.

I appealed getting her a bed and haven't heard anything yet.

Also, I applied for Bureau for Children With Medical Handicaps and haven't heard back either. Looks like I need to make some calls. They might be able to help us get items that insurance won't pay for, like the bed.

We are continuing the speech therapy 1-2 times a week. I am not impressed. I really don't see him doing much for her at all. That will be over next week and I won't be renewing him coming back. She will be starting school in August anyway.

One day last week Amber came home from PPC hysterical. She was totally hot. I made many calls and no one could tell me what was wrong. In the van they claim the air was on, but it couldn't have been making it to her. My thought is she was the second stop and was in the back of the van and wasn't getting the air, plus when the van was sitting and the doors were open, she was really getting hot. We stripped her down to nothing and gave her some water and she was better after about a half hour. I am so sad for her to be so hot that she was crying. Also, it is very dangerous for her. People just don't get it. They'll stop everything for a seizure, but not when she is overheated. Now I drill everyone and they are annoyed with me, but who cares!

Friday, June 25, 2010 8:40 PM EST

Amber going to PPC is working out great! It is so nice to have her picked up each day and dropped off. I didn't realize the impact of having her go there AND having the transportation taken care of. It was so needed for the whole family. Now that she is going, I see what a heavy load it was for me--the guilt of her sitting in the living room with nothing to do, the guilt of the other kids having to care for her when I'm not home. So she is doing well and I am so thankful we have this option. Amber goes three days a week--Tuesdays, Wednesdays & Thursdays. Today she was home and there was no shaking. I just don't get this. I can't figure out why she is not ok most days and then every once in awhile all is fine. I have read some about electrolytes not being right. I need to investigate that further. I don't think this is just a "Rett thing". I think it is something simple and I just need to find the key to unlock this problem.

I am going to be a mentor for The Daughter Project. www.thedaughterproject.org
Human trafficking is a huge problem in this world and here in Toledo. I am participating in a three day training event. Tomorrow is the last day. It is totally draining me (mentally). I am hearing things that I can't even believe are happening to young girls. Anyway, one of the attendees runs Serenity Farms. Serenity Farms plans on using their horses as therapy for these girls that have been trafficked. These horses are great therapy for the wounded and hurting. Amber just went there a couple months ago with her class. I wasn't even going to say something, but found myself walking down the hall with the lady who runs it so I did. I told her my daughter had gone there and as soon as she heard it was Amber she said of course she remembers her! She said she goes to Amber's class often with her dogs. Wow! She asked if I got to see the DVD of the class visit to Serenity Farms, which I had not. Sure enough, today she brought it to me. I just watched it and I had tears streaming down my face it was that good. So glad I got to see it. Amber was able to interact with the horses and do crafts and all sorts of stuff.

I just find it so amazing that I am pursuing helping these girls that are victimized and yet Amber still somehow is intertwined in this. I'm just following God's leading! He knows the big picture even if I don't.

The Spirit of the Sovereign LORD is on me,
Because the LORD has anointed me to preach good news to the poor.
He has sent me to bind up the brokenhearted,
To proclaim freedom for the captives
And release from darkness for the prisoners
-Isaiah 61:1

Friday, June 18, 2010 7:37 PM EST

Amber is doing much better. She slept all day Wednesday and then all night. Thursday morning she woke up happy, alert and absolutely no shaking. Today was a great day, but she is starting to shake again so I just gave her some medicine. I am realizing the medicine is a must. I sure hope we don't have to up the dosage much.

Amber had speech therapy today in our home.

Yesterday she went to PPC and did great. The reason it took so long for her to get home on Tuesday: There was alot of traffic, there was another child that got dropped off, and because she was shaking so much, the driver had to pull over a few times. Hopefully that won't happen again. I am working on PPC being able to give her the medication for shaking, only if I tell them to, before she rides home so this never happens again. We have to get paperwork filled out and specific wording from the doctor before they can give her this med, but it will happen.

I plan on taking Amber swimming in our pool tomorrow. Both of us have not been in it yet this year! It is time!

Wednesday, June 16, 2010 7:38 PM EST

So Amber pretty much slept all day today. I kept her home from PPC. She would not go to sleep last night and was shaking like crazy. Then I heard thumping last night and found her having a seizure and was completely off her bed. Then when it was done, she seemed so out of it. She was sleeping, but it was more like she had passed out. And she had twitching going on at certain parts of her body--cheek, hand, leg. Then this morning she was very shaky. I called the doc. and made sure it was ok to give her the seizure med and the relaxing med together and it was so that's what I did. So that made her sleep, which is a good thing until she gets better. I am hoping she will have a good poop and be better tomorrow.

I made calls and she had left PPC at 4:45 & she didn't get home until 6:10. There was another child dropped off before Amber. There was lots of traffic. And then with her sliding down in her seat and him stopping to get her in her seat right.... Yeah, I am a little suspicious, but there really is nothing I can do at this point. I think yesterday just REALLY did her in. I am realizing that Amber really gets stressed. She may not show it like we would think. Like she doesn't start crying or screaming, but she is stressed. And I don't know if it is an overload neurologically or mentally she is scared or a combination. I have a feeling she will need to be on medication just for anxiety for the rest of her life. The poor girl is not herself.

Oh! And one more thing. One time when I woke up, Amber was soooo hot, which is not a good thing. Well, with all her movement going on (who knows if she even slept much last night) and then having her casts on and we didn't have the air on because it wasn't that bad, she was VERY hot. So I got a fan going, took the casts off and just put a sheet over her. I feel so bad that she was so hot, but at least I caught it during the night and not this morning. Needless to say, neither one of us got much sleep.

Hopefully tomorrow will be a better day.

Tuesday, June 15, 2010 9:19 PM EST

Today was Amber's first day going to PPC and getting transported there. She had an "episode" as she was being lifted in her chair into the van. Then she had two seizures during the day. Then she was very late coming home and I was unable to get details as to when she left PPC because they had already closed. (I will find out tomorrow.) The driver said he had to keep pulling over because she was having seizures the whole way home and was falling out of her seat. I don't believe she was having seizures since she doesn't have them one right after the other and she is tired afterwards, which she was not when she got home. She was just having her major shaking/trembling going on. It gets so bad that she slides down in her seat, but because her feet are strapped in, it becomes quite uncomfortable for her. I am hoping she will do better tomorrow. She has not been having many episodes and/or seizures lately, but obviously all this change stressed her out quite a bit. Also, her shaking/trembling has been better lately (hasn't it?) but today was just a bit much for her. Good news is she was happy.

She will be attending PPC Tuesday, Wednesdays and Thursdays, getting picked up about 9:30am and returning home about 5:30pm.


I am a little concerned about the amount of time it took for her to get home tonight. Not sure of the exact amount of time it was, but she was to be picked up from PPC at 4:45 and home no later than 5:30. She didn't get home until 6:10. Yeah. Kindof makes ya wonder. I will get more details tomorrow and hope that all was well. I am so distrustful of complete strangers driving her around. This was the first day and I know they are trying to work out the kinks so I am trying not to get too worked up. She definitely needs to be in her wheelchair more secure so that this doesn't happen again with her sliding down in her chair. She is really strapped in, but I think something needs to be done about it. Like something between her legs so she isn't able to slide.

Friday, June 11, 2010 8:40 PM EST

Amber whined a little today. She needs to poop. She is also shaking, but I am about to give her another dose of seizure med so she will be fine.

We had a grad party to go to tonight, but it was so hot that Karl and I went at different times so someone could stay home with Amber.

I read something today on the RettNet, my internet support group. It is not the whole email, but the part that really got me. I really really think all is ok and I'm not sad about Amber or our situation, and then I realize how easily I am moved to tears by certain things and it makes me see how much she impacts our lives. It was written by Ed. This is what it said:

....And then it hit me. When friends, family and acquaintances ask about how its going with care, they are, more likely than not thinking of the complications brought on by life with a severely handicapped child and the pain it engenders.

However, like Paul Harvey, I'd like to share with them "the rest of the story". But that part never gets the attention that the travails get. The rest of the story has to do with the character of our children, that despite overwhelming disability they give us a stronger character.

Yesterday when the seizures were increasing, one came on and she cried and thrashed a bit in my arms and it passed quickly as opposed to locking her into full tonic mode. Of course I always give her credit for fighting it off. And, as usual she accepted this rare victory. She smiled and clapped. That is the other side of the story.

Only parents of such brave little or big people could understand that these lessons in character building are so good for us.

Friday, June 11, 2010 7:53 AM EST

Yesterday was a busy day and Amber loved every minute of it. We went to the doctor and got all the paperwork and scripts we needed for Amber to get transportation and go to PPC. Then we went on to Rehab Dynamics and had her casted. She will wear casts at night to help make her ankles go the way they should. I forgot to put the casts on last night. Go figure! Jim, our student that is hanging with us for ten hours went and then also went with us to National Seating to check out some of the special chairs they have. Then we went home and had a speech therapist come in for therapy.

The therapy went well. We tried some different switches and toys. We also helped Amber feed herself. She had a great day, although she did have some major shaking off and on.

I started her first dose of Zonegran last night, which is for seizures. It definitely helped her shaking go away and didn't make her too sleepy. Maybe this drug for seizures will also help her shakiness!

I feel like I'm forgetting something, but I think that's it for now. On my way in to work I will drop off the remaining paperwork and also call the transportation people and get that squared away.

Busy weekend with graduation parties and other stuff.

Wednesday, June 9, 2010 8:30 AM EST

Amber has been shaking/tremoring like crazy. I gave her some medicine this morning to help it. She is happy, but can't sit in a chair and when I woke up this morning, I found her totally off her mattress. I am going to get the seizure medicine this morning and I know that medicine will help calm her also.

Yesterday was the sibling panel at BG. Hayley (14) spoke, along with three other siblings. It was videotaped (quite professionally with lots of people there for it) and will be used for teaching purposes. Tori (11) & Mariah (6) were also there. After the taping, they were also asked questions. Amber and Jay stayed home.

Tomorrow Amber has an appointment to get her legs casted. This is what she will wear at night to help straighten out her ankles. I really don't know much about it at this point. The student we are working with at BG is also going to go since he is spending ten hours with us and will probably be a great experience for him.

A tornado hit just down the road from us. Unbelievable destruction. I am afraid we weren't very careful during the storm and never even went in the basement. I have learned my lesson and will definitely pay more attention to those sirens. Thankful we were missed.

I almost have the paperwork done for Amber to go to PPC. I have one more paper I need to get from the doctor. Also, the transportation part is not arranged. The one company didn't work out (they aren't returning my calls) so I will call another today. Hopefully she will start going next week.

Monday, May 31, 2010 9:55 AM EST

Amber has been extremely happy. She missed her last week of school! It was too hot to send her. Her teacher and aide came over to say good-bye and bring some of her stuff home. Amber was soooo excited to see them. It was so cute. It makes me feel better just knowing she enjoyed seeing them.

For the last week Amber hasn't really had any episodes until this weekend. Also, some days she is shaky and some days she isn't. I just can't quite figure out why some days are better than others. I am always paying attention to what she does, how much she sleeps, the temperature, her bowel movements, what she eats, meds, etc. I just can't figure this out!

I tried picking up her seizure medicine at the pharmacy well over a week ago and it wasn't approved by insurance yet. I still haven't got back over there and haven't had the need to start her on it.

The in home speech therapy has not started yet. Insurance has not approved it and we are still waiting....

I have found some really really cool chairs and items I want to get for Amber. I have to find the right avenues to get them paid for because they ain't cheap!!

I am trying to get her into PPC for the summer. I will finish the paperwork today (it is a folder of papers and very overwhelming). I expect a call from a transportation place tomorrow to see about getting her there and back.

There is a committee for doing the fundraiser for Amber. I don't know many details, but this won't be happening any time soon. It takes time to do this and do this right! I have complete confidence in these people doing an awesome job and I am very grateful.

Tuesday, May 18, 2010 8:12 PM EST

Amber left for school yesterday morning as happy as can be. I got a call that she had an episode and then was sleeping. In the afternoon I got another call that she seemed distressed....I asked if she was whining or crying. Nope. She just wasn't smiling. I said she doesn't always smile. I then went to school and she seemed fine. I talked to her and asked her what was going on and she immediately smiled and livened up and was fine after that. Sure makes a person wonder. Maybe she just needed to be stimulated....

When I got there, they were getting ready to do the communication board. There was music playing in the background. I pointed out that the music would be very distracting to Amber and I don't see how she could concentrate with that going since she responds so well to music....

The teacher asked if I had a chance to visit Woodlane. I told her I had and I want Amber to stay where she is. She said they have so much at Woodlane for her. I said maybe the school needs to get some of that stuff also.

I kept Amber home from school today. During the night I heard noise on the monitor. I checked on her and she was having an episode. She seldom has one during the night. That concerns me. I think she is having seizures, not just episodes. These seem different. I called the doctor and told his nurse about the seizures and the severe shaking/tremoring that is going on. We are starting her on a seizure med that she was on before. Hopefully this will help the shaking AND the seizures. I told them no way were we going in the hospital for testing again. I'm just not up for it and half the time she doesn't do what I want anyway! If this med doesn't help, they are going to put her on a monitor that can be done at home! Yippee!

I am so happy with the doctor/nurse moving on this so quickly and not giving me a hassle. They are efficient and that's what I need and why I like them so much.

Amber has been sleeping most of the day and I am not sure what is going on with her. She seems to be getting worn out by these episodes that I will now start calling seizures! Ha!

I spoke at a class in BG today. I was on a panel with three other parents and we told our story about our children. It went well and I feel like we make such an impact. I will now be paired up with a student to spend ten hours with them. Also, in a couple weeks there will be a sibling panel and the kids will be involved in that.

Thursday, May 13, 2010 7:55 PM EST

Today Amber was evaluated by a Speech Therapist in our home. Her therapist is a man and he is great. Amber seems to respond to men so this should be good. He is full of ideas and he has already got me thinking. He can come up to three times a week! We are going to start using Amber's switches and communication board. Our only problem is scheduling, but he is very flexible just by the simple fact we can cancel at a moment's notice and it won't be a problem. I have his cell phone # & he has mine.

Amber will be visiting Serenity Farms tomorrow with her class. They have therapy horses and dogs.

Her last day of school is 5/27. Wow!

I stopped in at Prescribed Pediatric Center to get all the paperwork for her to go there this summer. It is a folder of papers to be filled out and also for her doctors to fill out. They warned me they have many kids already coming in this summer and they may not have room for Amber. I told them not to put Amber in if it meant a single mom or someone who REALLY needs their services would miss out. I don't want someone losing their job because they don't have day care. We don't need it THAT much, but it sure would be nice for Amber and the rest of the family. I am sure it will all work out.

I am very excited about the whole speech therapy thing. I think we are going to make great progress and have great information to give the school next year on what they can do to continue to help her. We are also supposed to get physical therapy in our home. I hope that therapist will be as great as this guy is going to be. We could never get this much help for Amber if I had to drive her somewhere.

Tuesday, May 11, 2010 7:19 PM EST

I went to Woodlane today. It is a school for handicap kids and it is approximately 40 minutes away. It was nice enough, but just not what I want for Amber at this time. I just feel she would do so much better being around kids who are running around and talking. I realize not everyone in her classroom is like that, BUT the other kids in the school are. She is at lunch with them, she sees them in the hallway, she participates in some classes with them and they are on the bus. Hopefully I won't get too much hassle with my decision. I think I need to go to school more often and make sure things are going the way I want. It is so much work! Sometimes I just want to run the other direction and hope everything works out. LOL!

One good thing about touring the school, I got lots of great ideas on some equipment I would like to get for Amber. They had all kinds of cool swings and bikes and toys. I will have fun picking out some more things for her.

Also, I have asked my internet support group about beds. Some people came up with some great ideas. I am still going to try for our dream bed, but in the meantime, we are going to make do with something else.

Amber is doing well and is happy. She has been tremoring alot. Also, yesterday she had three episodes. I am starting to wonder if some of these are seizures.

I am going to particpate in another class at BGSU. This time it is a five week class. I will be required to spend ten hours with one student. Also, next Tuesday I will be on a panel talking about Amber during this class. Then in June, one of my kids (haven't decided which one) will be on a sibling panel to talk about having a sibling with special needs. That should be a good one!

I also have a doctor home visit in a couple weeks that I will do with another parent. This is where we help educate residents about having a special needs child.

I know maybe it is hard for you to understand why I don't want Amber at Woodlane, but I just believe Amber has so much going on in her head and putting her there I think will make her go backwards in her skills and mental state. Something else I think is important is typical kids need to be around kids like Amber. I think it will help THEM be more compassionate understanding individuals. We all know what we used to think about "those kids" in the special classroom. Wasn't it the norm to make fun of them? Times are changing and I want Amber to be a part of that change and educate her peers.

Saturday, May 8, 2010 7:27 AM EST

Amber saw our physical medicine doctor about her feet turning out. She is getting callouses (sp?) on her ankles from her AFOs. After waiting in the waiting room by ourselves for an hour, the nurse poked her head out and said the receptionist never told them I was there.....ARGH! We have to make an appointment with Rehab Dynamics therapy center to get fitted for a cast. Amber will need to wear the cast at night.

Thursday I sent a note into school that I would be home all day. We write back and forth in a notebook. At 2pm I got a call from one of the aides that Amber had been whiny all day. They said she felt warm so they put her in shorts. They took her temp. No temp. Why didn't they call me? They tried different things....took her AFOs off, put her in a bean bag chair...I immediately went and got her. I was so mad and upset. I explained to them that she is not to be unhappy and I was right around the corner and could have gotten her. I know how to make her happy when others don't. (Not always, but usually.) At the very least she could have been laying down, getting Tylenol, whatever she needs AT HOME. They said they were trying not to bother me and give me a break. HELLO?! After all this time they just don't get it. When did I ever say I needed a break? I want her to be happy! That was totally unecessary. I would like to make those kind of decisions, not have them made for me. I got her home, took off her AFOs and her arm splints. Her one arm splint was digging into her arm and there were red marks. I also gave her some medicine to stop the shaking. She was TOTALLY FINE the rest of the evening. Even laughing and smiling. Another day that Amber had to suffer for absolutely no reason. I think the arm splint was bothering her ALL DAY. I just wish people would follow my instructions. When she is at school and I don't get a call, I am assuming she is happy. Now I will always question that.

I have an appointment next week to check out Woodlane in Bowling Green. It is a school for the handicap. Last week the teacher called me and actually said she had checked out Woodlane. She said they are so much more equipped to handle Amber, "Not that we're trying to get rid of her". Yeah right. I am starting to get really bugged that the teacher is pushing this. I would have never even considered Woodlane if the teacher hadn't started her little crusade last month. Remember she had me come "witness" another child's actions in the classroom? I wondered where all this was heading, and now I know. We will see. Woodlane is a good 40 minutes away. Amber's school is 3 minutes away. I plan on keeping Amber at her current school, but I figure I need to check out all my options. Maybe the teacher is sincere and wants what is best for Amber, BUT I am VERY suspicious. I think SHE doesn't want to deal with her. I smell a battle ahead of me.

I really don't believe Amber is as hard is they make her out to be. I did meet some really great parents at my Monday evening class that I know can REALLY help me in dealing with the school. The school IS required to provide an education for Amber. The problem is Amber will have her same teacher next year. After my Monday evening class, I realize the exceptional teachers are few and far between. I know I really liked this teacher in the beginning, but I'm just not seeing any progress or fresh ideas.

We had an evaluation for Speech Therapy to come into our home this summer. I swear I have tried this before and we weren't able to get it.

The powers that be say they will not approve the bed, but if I still want to, I can appeal it....a yeah, I think I'll do that.

As frustrated as ever with everyone!

Tuesday, April 20, 2010 4:43 PM EST

I went to school this morning. There is so much I want to tell, but just can't. It wouldn't be in the best interest of Amber because I'm not sure who is reading this.

I made some suggestions and I know some things will change. I definitely need to go back more. I now see that I am going to have to show people how I want Amber educated. I have already started working less hours and I am going to do some more research. Funny, but the Special Needs Supervisor for the county ended up coming there I am assuming for something not related to Amber. But I was able to talk to her and voice my concerns.

In talking with other parents of RS girls, some are reading sight words and able to count up to 100!!!! Amber doesn't get that chance so how would we know??! So I am setting the bar high and I want Amber to show us what she can do. She doesn't cooperate alot and I believe it is because she is bored and thinks the stuff is stupid. If the girl has incentive, she can do anything! She loves candy and attention and books and pretty clothes and I could go on and on. We have to use those things to get her motivated.

One other thing. She had a good two days. Real good. I said something to the bus aide yesterday morning that last week she seemed to be scared when she got to school and wondering if anything could be happening on the bus....just makes me wonder....and I guess I'll never know, but Amber had two great days since I said that....

Always thinking thinking thinking....

Monday, April 19, 2010 10:22 PM EST

Tonight I did a presentation with our two students. I think it went really well, BUT I saw the video for the first time and I am not happy. The video was taken about a month ago of Amber while at school. I saw her with the aide and the teacher and just about everything they did was WRONG WRONG WRONG! To me it is common sense stuff, but above and beyond that, THEY are the specialists and should know better.

1) Amber's communication board gets moved all around. It should be kept in one place. It is very hard for her (or anyone for that matter) to get the cursor where it should go, let alone someone moving the stupid thing around.
2) They have her picking letters as they pop up. They go in order A-Z. Not sure what type of learning that is....there are no choices, just one letter at a time pops up and she has to select it.
3) In the video they were walking her and her shirt was up so her belly showed and the aide was just doing a poor job of making her walk.
4) When they put her back in the wheelchair, I could see her leg/foot was bothering her.

And last but not least, there was absolutely no joy or fun or interaction on a positive level. You would have to see the video to understand what I am talking about.

Walking into that classroom you can cut the air with a knife and it feels like someone just died.

Through numerous things happening in the last couple weeks, on top of seeing the video tonight, Amber is once again being wronged. I am going to the school tomorrow and give some direction that is obviously desperately needed.

I am making some calls tomorrow. I am going to call the Parent Advocate for the county and see if she can give me some guidance.

Sunday, April 18, 2010 3:19 PM EST

Amber is continuing to not do well at school. I don't know what is going on! Friday she was happy, got on the bus at 8:15, and I got a call at 8:35 that she looked very scared and had an episode. I am so confused. I'm not sure why there are problems now. Yes, Amber stops breathing. Yes, she shakes. She also has gagged a few times, which is acid reflux. I am giving her Prevacid for that again. I don't know what is different now. I feel the teacher is nervous all of a sudden and I feel I don't have all the facts. Something is going on. I am going to spend more time at school and figure this out. I am thinking I need to ride the bus to school also.

Amber has been fine this weekend. She is very happy and alert. Yesterday she did sleep quite a bit. Sometimes she needs that. We got her hair cut today. She looks so much better. My batteries are charging for my camera. I will get pictures posted soon!

Tomorrow our two students and I do a presentation about Amber and what we have learned from each other.

Wednesday, April 14, 2010 10:23 AM EST

Amber had a phenomenal day yesterday. She was alert, NO SHAKING, and very happy. I went to her school twice. Gosh, I don't know where to begin. I really am not sure who reads this, so I have to be careful what I write. So you aren't hearing all my thoughts, but this is about as good as I can do.

Anyway, her teacher called and said she did her choking thing and it really scared everyone. They thought she was choking, but then she was better and there was nothing in her mouth. I suspect it is acid reflux. I don't really give her medicine for that much anymore because I didn't see a problem with it, but I will start giving it to her every day now. I went to school to give it to her and the teacher said she would like to talk to me some time. Then she went on to say various things....there are some very violent kids in the classroom...Amber has some high medical issues and they don't always feel qualified to take care of her....they have learned everything from me....she felt I needed to know about the violent kids. If she had a daughter in that classroom, she would like to know what is going on during the day.

So I am making this as short as possible. I came back later and one of the students was having one of her violent outburts. So I was able to witness that. Sometimes she throws things. Sometimes all the kids have to leave the room. I don't know. I could go on and on, but I didn't walk away feeling good about everything. I didn't sleep well last night. I don't like that Amber is at the mercy of everyone. I will be glad when school is out. But I am sure we will have our share of issues this summer. One day at a time.

There is much more I could say. One of the boys went to the bathroom by himself. I am sure he probably didn't wash his hands. No one asked him if he did, or checked. Then he held a tambourine, and then passed it on to Amber. Yuch! Then, of course, at some point Amber will put her hands in her mouth. I cleaned the changing area with a Clorox wipe and gave some instructions on what I would like to see changed. It was filthy, and that's just what you can see......

I don't feel they are teaching Amber at her level. Of course, sometimes they do, but I did see alot of preschool type stuff going on. The kid is eight years old and she has alot more going on then I think she is getting credit for. And who else would know that but the people that work with her every day. I don't want to sound like I am totally unhappy with everything, but I do have quite a few concerns. I wish we could go back and have her preschool or kindergarten teachers......I do like most of the aides in her classroom, especially Amber's designated aide.

Amber didn't go to school today. She was very happy, but just as the bus was coming, she started crying. I know it is the whole pooping thing. Oh, I forgot to mention she pooped at least six times yesterday. So I am assuming that had something to do with no shaking and the great day she had. Today she is cranky because of the whole pooping thing. Still trying to get it right for her!

One more thing. And I think I have mentioned this before. Amber has a boy that hovers around her. He loves her so much and gets upset when she is upset. It is adorable to see. He really cares about her.

Saturday, April 10, 2010 5:29 PM EST

Amber continues to shake. She does seem to do better when she is laying down. There is no consistency whatsoever to what is going on with her. I can feed her something and the shaking stops, I can change her position and the shaking stops, I can give her a vitamin and the shaking stops....and then it will start back up again. I have no clue what is going on. Amber sees her physical medicine doctor on April 29 & the neurologist in September. Neither were able to help her last summer when this happened, except for giving her a drug. I do give her that drug periodically when we need to go somewhere or when I just think she has had enough of the movement. She does seem to be very happy through all this. It is making me crazy not figuring this out!

The bed was for sure denied. I guess they no longer fund beds. I am going to appeal it. I can get a swing for her, but not a bed? I really wonder what they want us to do. The bed is quite expensive. If I were to put her in a home, she would get the bed there, or something comparable. If I don't win, then I will go to BCMH (Bureau for Children with Medical Handicaps). Amber is not enrolled with them, but I am working on it.

I called about getting her into Prescribed Pediatric Center this summer. I have to pick up the paperwork and meet with them. I also asked about transportation and I called a place. That was just a joke. The woman who I spoke with was clueless. I told her I have never done this before and what do I do. We talked in circles and finally I just had to get off the phone. I have to fill out lots of paperwork and so does the doctor. OK. Where do I get the paperwork? Do I get it from the the doctor? She never did give me a straight answer. Also she said it is too soon for me to do anything and I need to wait until tw weeks before the transportation starts and then call them. Now I know things just don't work that way. So I called PPC back and they are going to help me out.

I called Noah's House at the Anne Grady Center. They provide respite care. I just want to check into things and see if I could ever have Amber cared for if we wanted to do something and aren't able to take her. I am hoping I could get someone to take care of her there that I already know. I am just checking it out, not necessarily ever going to use it. No one called back from there.

I get so frustrated with the people I deal with. There are very few quality people that do their job right. It is so frustrating. When I find good ones, I am always so excited and tell them how wonderful they are!

Sunday, April 4, 2010 12:00 PM EST

Amber didn't get to go to the Easter egg hunt. She is still shaking quite a bit. I have given her medicine one time only and that was on Friday. I may give her a pill today just to help her out.

Yesterday there were a few moments when she stopped shaking. One time was when I changed her position and put her in a chair. The other time was after I fed her some salisbury steak. So it made me wonder if she needs more protein. She will get meat today so we will see. Always thinking thinking...

Amber continues to be VERY happy. She did have a little gas this morning, but has since gotten over it.

Last night Tori layed with her for a very long time. Like an hour. Each time I came in the room I was amazed and what I was hearing and seeing. Tori was showing Amber the pictures on her phone. They were both laying next to each other and Tori was just talking away to her and showing her pictures. It was the most precious thing to see EVER! I got very choked up watching the two of them. Amber would look from Tori to the phone and then back to Tori. She was totally enjoying their time together. So often I see Tori taking a moment out for Amber and it just moves me beyond words. She does this totally on her own because she cares so much.

Have a great Easter everyone. Now here is another holiday that we celebrate that has to do with Jesus. Do YOU know why you are celebrating Easter?

Friday, April 2, 2010 8:44 AM EST

Amber has started her severe shaking and jerking again. You might remember she had this at the end of last summer. We gave her drugs and lots of them, but she kept needing more, so I ended up taking her off drugs and giving her magnesium. Well, we continue to give her magnesium, but it is back. I can't help but wonder if this has something to do with the weather and/or allergies. So I gave her an allergy pill, but I am afraid I am going to have to give her those meds until we figure this out. I have to call the doctor today and see if he will prescribe more as our appointment isn't until September! It's always something. Good news is she is VERY VERY happy.

I did my presentation in front of my class Monday. I don't feel great about it. People started asking questions and I kindof started rambling and feel like I didn't even get to share half of what I wanted to. I do know people learned alot. It just didn't go how I thought it would. I'm still working on the speaking in public thing!

Amber will be going to an Easter egg hunt tomorrow. I hope we can get this shaking under control a little. I don't see how she can really sit in her wheelchair like this.

Friday, March 19, 2010 8:46 PM EST

Yesterday was a day from Hell. Amber didn't seem quite right when she woke up. I kept her home from school. By 8:30am she was crying. The crying continued throughout the morning. I ran to the store across town and left her with the kids. I gave her Ibuprofen before I left and hoped she would sleep a little. I didn't know what was wrong. She had had a big poop so I didn't figure that was the problem. The kids called and said she wouldn't stop crying. I rushed home and on the way my car broke down. Karl had to come rescue me. In the meantime, the kids continued to call and Amber was crying harder and harder. By this time I was a mess and was crying myself because I could hear her over the phone and I was helpless. We finally got home and I rushed her to the hospital. By this time it was 2pm. They ran urine tests, blood tests, x-rays, CAT scan. Amber was continuing to cry while at the hospital. After a few hours she calmed down and they sent her home. As I put her in her wheelchair, she started crying again so I said we weren't leaving. So they ran more tests. Still nothing other than gas in her bowels. We went home at 9pm. This was after her getting poked SIX times for the IV and TRYING to draw blood. When we went home she was subdued and no longer crying, but definitely not happy. She slept through the night and woke up this morning ok, but not happy. Throughout the morning she had some really major poops and she is fine now.

WOW! I was such a mess yesterday. It completely does me in when she is crying. And it also was hard on the kids. We all wanted her to be better. I was searching and searching for what could be the problem. I read through all my papers I have ever printed on what the cause could be for crying...appendix, toothache, gallbladder, kidney stone, conspitation, reflux.....the list is endless. I was out of my mind with worry, but now she is ok. She even bit me at one point. She was pleading with me with her eyes to help her. You could see how she was so much trying to communicate. I just had to tell her I knew there was something wrong and I was trying and that I knew she was in pain. We did give her Tylenol with Codeine at home and the hospital. It didn't help her at all. We also gave her gas drops and the crying continued. They wouldn't give her anything stronger at the hospital.

So all is well now. We survived another crisis. Poor Amber what she has to go through. She is smiling again and I am thankful she is back to normal.

Sunday, March 14, 2010 9:35 PM EST

Amber has a bad cold. She is miserable. She has started her shaking again like she did last summer. It comes and goes, but it was real bad today. I am sure it has something to do with her being sick. I am definitely keeping her home from school tomorrow. I am quite worried about the shaking. I just don't know what to do. I don't want to start her on the drugs again, but I may have no alternative until we figure something out. It is like a Parkinson's patient. Her movements remind me a lot of like Michael J. Fox.

Last night we were able to talk to Karl by a web cam. Amber got soooo excited. It was the cutest thing. She would look at me then Karl and back. She didn't know what to make of it. She couldn't believe what she was seeing. It was fun! He will be home tomorrow and I can't wait to see how she reacts. She definitely has missed him.

I am trying to update more!

Friday, March 12, 2010 9:40 AM EST

Lots been going on! I really need to post more often!

Let's see. The students from BG have to spend 20 hours with us. We went to dinner one night, then they came back to the house and we talked. (About Amber of course!) Another day they attended Amber's IEP meeting with me, then we went shopping at the mall. Then the next day they spent some time with Amber at school, but I didn't go. I think they are learning so much about special needs kids and seeing things from a different angle! It has been fun!

Amber's IEP meeting went well. Some things have been going on that I don't really like, but nothing too major. 1) They were putting weights on her feet to keep her legs down because she wouldn't always stand on them when they were trying to walk her.
2) The communication board is not being kept in a stationary spot but is sometimes moved around to help her out.
3) They are trying to strengthen her left hand by holding the right hand down so that she must use the left hand. (She is right handed).

Well, do you see anything wrong with what I just listed? I'm not going to go into the details, but let's hope things will change.

I did take Amber to the guy who does her AFO's. She has these large marks on her bone that protrudes at her ankle. What the heck is that called? Well, she is bending her feet outwards and that is not natural or proper. So we are going to get casts for her to wear at night. This will be a process. See a doctor...get a script...see a therapist...etc. etc. I have learned how to put her foot in the AFOs differently so it is more comfortable and makes her foot stand properly.

We are moving forward with the bed. No news yet. I am very excited about it.

In talking with some women at church, they wondered if we were ever going to add on to our house, what are we going to do about Amber as she grows and so on. We talked about doing a fundraiser and I said it was so overwhelming for me to take that on right now. Sooooo the next week they said they have made up a committee and they are taking over! Whoo hoo! We'll keep you posted!

Karl is in the Philippines with Jay. A few days this week Amber didn't do so great. She had lots of episodes and would quit breathing. She would be fine at home, but then I would get a call that as soon as she was at school or even getting off the bus, she didn't look good, having episodes. A friend suggested to me last night that maybe it was because Karl was gone and he usually puts her on the bus!! So I really talked to her today about daddy will be back and he will start putting her on the bus again real soon. I am hoping that made a difference! I haven't got a call from school yet today!

A couple weeks ago I did a presentation with two other parents in front of 68 BG students going into some sort of educational field. Usually when I do this, it is scripted. This was my first time doing it with just my notes! For the first time I wasn't scared out of my mind. I feel God really prepared me for it. The Sunday before there was a service that was just for me (at least that's what I think) and it was about giving your fears to God and stepping out of your comfort zone and that's exactly what I did. So I think I am ok with public speaking and will just get better at it with more practice. One of my biggest fears overcome! Only God could give me the peace that I had on that day. It feels great! I give my big presentation to my Monday night class in about two weeks.

Amber's dentist has retired. We received a letter. So we are done. I am so disappointed. So now I have to find a dentist that is willing to see Amber...and soon!

I will try to update more so it won't be so long!

Friday, February 26, 2010 10:36 PM EST

“Congratulations to everyone and thank you all for your hard work. It is exciting to report on the success of the February 24th MSNBC event. As you know, IRSF was the recipient of an extremely generous ad donation which was hosted on MSNBC’s homepage for a full 24 hours on the 24th!

The creative work for the ad was donated by The Vidal Partnership and all of what happened on the 24th was made possible by IRSF board member Christian McMahan. The MSNBC website alone, which generates approximately 3 million visitors per day, brought the IRSF website a total of 7,745 unique visitors resulting in a total of $80,845 in online donations!

We extend our deepest gratitude to each of you for the significant role you played in the success of the event. The buildup and publicity generated by your emails, phone calls, away messages and status posts made this achievement possible. February 24th is officially the greatest day in online giving in Rett syndrome history.

Thank you so much for all you’ve done to make this possible.”

This was a great day for us all…

Best wishes,
Jennifer Endres
IRSF Family Resource Manager

Sunday, February 22, 2010 8:33 PM EST

Winning Video in the Extroardinary Measures Movie contest. Won $10,000 for research towards Rett Syndrome. Very informative video! You will have to copy and paste this. Then scroll half way down the page to click on the video. I didn't realize you can't put videos on this blog!

http://www.rsrt.org/nyc/thank-you.html

We are making progress with Amber's bed! A letter has been submitted for the doctor to sign. Then we will submit that to insurance. It all should go well! The letter was written by the people we get our wheelchair from. They are great! It was an excellent letter and really stated why Amber needs this bed.

Friday, February 12, 2010 9:22 AM EST

Today I am going to Amber's Valentine's party. It will be with the middle school special needs classroom also. I made Amber cute Valentines to pass out. I used her name stamp and I think their adorable!

I went to a different doctor yesterday regarding my back. The other one was messed up in their office (which is the same office personnel that is/was Amber's doctor) and I just didn't like how things were going. I went back to the doctor my other kids see. I honestly don't know why I ever left. I do know he thought Amber should see a doctor that is more familiar with handicap kids. That was a few years ago. I told him I wasn't having any luck and could we go back to him for Amber. He said he still receives info. about her and absolutely she can come back. That is a weight off my shoulders. We have an appointment in March at the same time. I am going to see another specialist and then going back to see him. Also, he prescribed something for me to take. Still not sure what is going on with me, but I at least am back with a doctor I like.

When I went to order Amber's Pedia Sure this month, they said they weren't able to fill it because they contact her Primary Care (the one we are leaving now) and she said Amber is no longer her patient. Another weirdo thing they have done. Is there a time frame you have to see a doctor before they say you are no longer their patient? I don't get it. They never notified me. That just confirmed I have to get far away from them. Our neurologist filled out the paperwork so everything is fine.

I am continuing my class on Monday nights. It is quite interesting and I really enjoy it. I have to say I am so nervous about my presentation. I don't do well speaking in front of people. It is one of the obstacles in life I am determined to overcome. Also, I am doing a presentation 2/25 at BGSU for Project SPEAK (Supporting Parents through Education, Advocacy & Knowledge). Hopefully I am getting better at all this speaking business. Usually when I do Project DOCC (Delivery of Chronic Care), I am reading a script. Project SPEAK there is no script.

Monday night we are going out to dinner with our two students and spending time with them. This will be part of their 20 hours with us.

Amber is doing well and is very happy. She is getting big! I just ordered shoes for her that open up in the back and are made especially to fit over AFOs. If they work well, I am going to order more. We are having a terrible time finding shoes for her.

Sunday, January 24, 2010 2:49 PM EST

I got the bed info. to our caseworker. Now we wait. I totally can't wait for Amber to get a new bed. I think it is going to make my living room odd (who cares!), but it is going to be wonderful for Amber, and not just for sleeping. TV time with Amber is a great way to snuggle and give her lots of attention.

Amber had a phenomenal couple of days. Yesterday she went horseback riding. Miss Kristin came with us (Amber's previous preschool teacher) and then visited with us afterwards. Amber totally remembered Miss Kristin. It is so cute to see her eyes sparkle and react to someone she hasn't seen for quite awhile. Amber sat up so straight on the horse this time. More than I have ever seen. She was very happy yesterday and did lots of giggling.

One day last week school called and said she wasn't happy. I found that strange since she was so happy in the morning. I usually can tell what kind of day she is having and it should have been a good day. I asked the teacher numerous questions, what did she eat, were her AFOs taken off, was she moved from her wheelchair, etc. They did have to change her pants, but only her shoes were taken off, not the AFOs. I knew something was wrong that had been done to her, but not being there, couldn't figure it out. When we got her home and took off her AFOs, we saw that her foot had partially come out of it and so it was twisted. Problem solved. It is frustrating when others can't figure things out, but I guess that's why mom knows her best.

I have started reading the book for my Monday class. I was expecting a boring text book. Wow. It really gets into the lives of four different children and what everyone goes through. I think I do so well with Amber and handle what life has dealt me, but when I read that book, I totally have a lump in my throat. It really hits home. I am looking forward to the class. I think each week I will gain so much and hopefully give so much also. Tomorrow I will find out who my two students are. Also, the students will be talking about themselves.

My back/tailbone situation isn't any better. Actually I think it is worse. I am seeing a chiropractor. Last week I saw him three times and I think I will see him as many times this week. Friday will be the end. I have forked out enough money and nothing has changed. I am very frustrated. In talking with people, I do think this isn't going to be a quick fix. I think I have done damage and sitting certainly doesn't help. Unfortunately, for my job I sit quite a bit. So when you see me with my pillow that I now carry around, you know why!

And now I am off to finish my "homework"!

Thursday, January 14, 2010 9:36 PM EST

Amber with her new hair cut and arm splints.

Thursday, January 7, 2010 10:06 PM EST

I got Amber's hair cut real short. I love it. No more pulling it back all the time. I just put little bows in it.

Amber is continuing to do awesome. We got some new arm splints. They were made by the same guy that does her foot orthotics. They go down her whole arm and she can't bend it at all. Still not sure if I like them, but it sure is nice to have something on that is secure and won't come off. Tori said "Mom, I would hate it if I had an itch and couldn't scratch myself". So Tori doesn't think they are ok. They don't seem to bother Amber though.

Well, I think I have hurt myself from lifting Amber. My tailbone and lower back has hurt for well over a month. I finally went to the doctor. They took an x-ray and found I have inflammation at my tailbone. I have to take a high dose of Ibuprofen for two weeks and cannot lift Amber! It really is getting to be a problem when I sit. Very painful.

I found a bed for Amber that I absolutely love. Now I can't wait to get it! It is called a Sleep Safe Bed. We are hoping to get a big enough one so that another person can sit with her in our living room when watching tv. Amber would so enjoy that.

Monday I start a class that is "Consultation Collaboration in Schools". It is through Bowling Green State University. It is for graduate students that are either going to be school psychologists or Special Ed teachers. There are ten of us parents attending and 20 students. We will participate in the three hour class each week. I am very excited for this. Orientation was last night. This class sounds life changing for the parents and students. I heard story after story about previous classes and the impact the parents had. Two students will be selected to spend a mandatory 20 hours with our family. In addition, I will be doing a presentation on Amber and the effect she has had on our family. Also, I will share the different things teachers, therapists, etc. have done that are negative and/or positive in Amber's life. These are our future school psychologists and teachers so imagine what they are going to learn from us parents. The teacher said to this day she sees old students and they share how much her class changed their whole thinking process about special needs children and what the class meant to them.

Thanks for signing the guestbook. I am always so pleasantly surprised to see who reads this.

Monday, December 21, 2009 10:47 PM EST

I just wanted to share that Amber has been doing great. She has been so happy lately. Lots of giggling and smiles. I continue to try different things to make her feel better. I haven't been giving her Senna for about a week. I switched her to Milk of Magnesia. It really seems to make a difference. Sometimes I wonder if the Senna depletes her body of vitamins. I must have read that somewhere, or maybe I just made that up! LOL! Anyway, she seems to be doing better without it. Sometimes what worked no longer works.

I have been thinking about the future for Amber. I am going to pursue getting her a real bed. We will set it up in our living room. It's about time Amber has a nice comfy bed instead of our "couch" she sleeps in now. I am going to start looking into getting an addition put on our house so that she can have a bedroom downstairs and a bathroom just for her.

Thanks for stopping by. I hope you have a Merry Christmas. Please take a moment to think about why YOU celebrate Christmas. Is it just a time to have fun or is there really some meaning behind it. CHRISTmas. Get it?

Saturday, December 12, 2009 3:24 PM EST

Wow. I keep putting off updating. Amber is continuing to do well most days. She gets shaky periodically and it usually is because she needs to poop or she didn't get enough Natural Calm. She is completely off all medications. I give her Senna every other day and Natural Calm every day. About once per week I give her Prevacid if she seems to be uncomfortable for because of acid reflux. Amber takes no medication for seizures. I haven't heard how the EEG went. I will need to call. I know it takes awhile to get the results.




Here is the panel of doctors we heard during lunch while in Chicago. Amber's is the second from the left.



We went to House of Blues. We all enjoyed it very much. We were up in the balcony and basically had a big area to ourselves.

OK. I had some problems posting pics, so this is it for now. I will try to post another time. Hope you all have a very Merry Christmas!

Thursday, November 12, 2009 7:40 PM EST

We have been in the hospital since yesterday at 1pm. Amber is getting very restless. She really hates the wires and bandage on her head. It is on very tight and she keeps trying to pull it off. I can't wait to rub and scratch her head when we get it off. I am hoping we get out tomorrow. That is the plan. She has only had one episode. She seems to have them in the morning so I am really hoping we have another tomorrow morning. She isn't doing much here so it doesn't trigger episodes. I can't get her out of bed to do anything, so that is where we're at. I am really hoping she doesn't get sick either. It looks like a lot of kids might be in here because of the flu. Amber hasn't gotten it yet this year.

Amber has been extremely warm and her face is very red. She doesn't have a temp, but she sure is looking miserable and warm.

Chicago was pretty uneventful. The doctors didn't really have anything new to say. Their answer is to give her the medication that was prescribed, but what I am doing (giving her Natural Calm) is working so they are good with that. This is the way Amber is and who knows what is around the corner. There are no answers as to why she shakes. It's a Rett thing.

We did go to the House of Blues Gospel Brunch on Sunday and Amber LOVED it. She was very excited and enjoyed the music very much.

We hope to be home tomorrow! That's all folks!

Wednesday, November 4, 2009 8:47 AM EST

Amber is doing ok. I can't figure this all out. SHe can have many days in a row where she is doing great and then she starts shaking. She had to go home from school early yesterday and she missed Monday. This morning she seemed ok, but not over-the-top happy like we like to see.

We go to Chicago this weekend. I really don't look to them to have an answer for this shaking problem, but who knows! I am looking into Amber seeing someone that can help her naturally. That is the route I want to go. I love our drugs when we need them, but I would like to try an alternative way. Otherwise, I always wonder if it is the drugs making her do the stuff she does.

Next week Amber goes in the hospital to test for seizures. This was my idea and I am wishing I hadn't signed up for this because who has the time! But I just want to do this one more time to verify she is not having seizures. She certainly looks like she is! But the docs tell me she isn't.

I am officially finding a new primary care doctor. Yesterday was the last straw. Last week I sent a fax asking for approval to let her go horseback riding. I needed the doctor to fill out a form. Never heard from the office until yesterday. In the meantime, last Friday, I sent the form to our neurologist and I had it back in my hands via fax 1 1/2 hours later!!! That's the kind of people we need in our corner! Anyway, someone called me from the primary care and said she has been trying to reach me and I haven't been returning her calls. As I write this, I don't even want to bother telling you the whole story. It is just a bunch of baloney. I have caller ID, I have voice mail. She did call twice yesterday and she is just trying to cover herself, but this needed to be done a week ago. I am so bugged and I don't think they even care. I am going to write a letter and tell them why we are leaving. Totally incompetent people and I deal with this each and every time. I'm done!

Amber went horseback riding Saturday morning and LOVED it! It was so fun. She was all smiles. Before she got on the horse, I pushed her wheelchair up to him and he buried his big head in her lap and licked her hands. She was startled, but loved it. And I have to say, it made me a little nervous, but how neat to see! By the way, the batteries in my camera were dead. I'll get some pics next time! At one point the horse sneezed a few times and Amber laughed and laughed. I am so glad we're back in the saddle! (He He. Aren't I funny?)

Well, the whole family is going to Chicago this time. We are driving. Should be fun. We are going to do some shopping and plan on eating well! I sure hope Amber can get herself back to normal. I dread taking her for a long car ride and in another city with her not being happy or shaking all the time...but then I do have drugs for an emergency. :)

Thursday, October 15, 2009 8:48 PM EST

The communication training went well, but was VERY overwhelming. I don't think I learned even 1/4 of programming and using that thing. I think Hayley actually got into it. Today she asked me if she could "play" with the device. So she added on some pictures and did some programming and let Amber watch her. It was great to have three speech therapists, (one was an intern) one teacher, one aide, her mom and sister all there for Amber. Wow! Thank goodness the speech therapists understand it much better than I do. This is going to be fun to see what Amber can do.

Amber is doing better. I am so afraid to say this, but the shaking is pretty much gone. I took her off Senna (for pooping), Prevacid (for reflux) and Klonopin (for shaking) and she finally seems to be doing great. The only thing she is taking is the Natural Calm, which is a magnesium supplement. I give different amounts to her depending on how she was the previous day. She is very alert and happy. And she doesn't seem to be having that crazy happy like she was doing. I believe that came about when she got too much magnesium. Ya know, I have no medical basis for anything I am doing. I am just a mom watching and observing Amber and it's working! So all is well right now.

One other thing I changed is I am not giving her quite so much Pedia Sure. Remember that we went from 3-4 cans per day to 5-6 cans per day over-night. Was it a shock to her body?? I decided to try skipping a feeding in the mornings now. She seems to be eating more food by mouth and doing well.

So I honestly don't know exactly what was causing the shaking: Pediasure, Prevacid or Senna. I probably should have removed them one at a time, but I was desperate to have her be ok and it is working.

I read that Prevacid has aspartane in it and it has caused Rett girls to shake. Who would have known!

All is well for now.

Saturday, October 10, 2009 7:16 AM EST

Hello friends. Amber really isn't doing well. Most days she is happy, but something isn't right. Even when she is happy, I don't like what I see. It is almost as if she can't control herself and she is borderline ready to lose it. I see it in her eyes. It's like her body is forcing her to laugh and smile, but it isn't fun for her. I guess only a mother would notice this. I am giving her some of the drug I stopped just to calm her down. Some days she is totally fine. No shaking and normal. But most days she is not fine. I just don't know anymore. SOmething works for a week and then it doesn't. I am observing and watching her and I just can't figure this all out. I don't even want to bother calling the Rett doctor again because I can't put into words what is going on and I just don't feel like they can help until they see her. So I am very anxious to go to her appointment in November, which isn't that far off thank goodness. I did call our Toledo doctor and will find out Monday when we can get in to have a video EEG. I want to make sure she isn't having seizures. Sometimes she has these VIOLENT episodes that I am afraid she is going to hurt herself. We have to hold her down because she is thrashing around so much. So the drugs help her, but not completely. And then they take so much away from her. She loses what little skills she has. I have to say, not being on the drugs, her walking is phenomenal. She just can't keep her balance. I wish someone could tell me what to do and it be the right thing to do. I feel like I am searching and searching for an answer and it is making me crazy!

So that's where we are at. She isn't crying. That is good. But sometimes the giggling and laughing isn't good either. I never thought I'd say that!

Pray for us to figure this all out. The Chicago trip I am sure will be very worthwhile and helpful.

Clint Black's brother had a daughter with Rett Syndrome. He wrote a song about her. Check it out! If I had a clue how to do this, you could just click on the link, but you will have to copy and paste.

http://www.khou.com/greatday/video/?nvid=405805&shu=1

Also, please take a moment and vote for the International Rett Syndrome Foundation for a chance to win some money! It only takes a few seconds!

http://www.ilovechristiecookies.com/contest/

Saturday, October 3, 2009 8:00 AM EST

Wow! Amber is doing great. I have got her down to one pill a day and I am going to completely take her off the medicine this weekend and see how it goes. She is continuing to take Natural Calm that I found on the internet and heard about from another mom. It is a magnesium supplement. Amber had one shaky day this week and she was having some pooping problems that day. This is just amazing and a miracle for us. She is so alert and on the ball! Each morning I wake up wondering what kind of day it is going to be like. We usually know immediately. When she wakes up giggling, we know it's going to be another good day.

So I have to say that the only explanation for this is God steering me in the right direction once again. I belong to an internet support group and DAILY people are mentioning things that work for them. Of course, I don't go out and buy everything I hear about. I think back to what in the world made me buy this natural calm. Another mom talked about how it helped her daughter poop and was good for her overall well-being. There was no mention of shaking. Who would have known it would have helped Amber's shaking! I bought it for the pooping part of it!! I figured the name "Natural Calm" would just be a bonus. Ha! I definitely notice if Amber is having a tough time with the pooping, the shaking comes back. But even when she goes, that doesn't mean all is well. Sometimes she needs to go even more and we are just trying to find that balance.

I am just so thankful that this has been figured out AND it isn't some drug. That drug was really making Amber a different person and she wasn't very alert. This Natural Calm is a miracle!!

October 14 Hayley and I are going for training on Amber's communication board. Our outside speech therapist, teacher, 1:1 aide and school speech therapist will also be going. Very cool. Now that the shaking is under control, we can move forward with this board. I know Amber is going to do so well because I can see how smart and alert she is now. The real Amber is back and ready to get down to business!

Amber starts back to horseback riding October 31. It has been a long time. I can't wait to see how she reacts to the horses and if I see an improvement in her walking. She definitely walks better now than she did the last time she did the horseback riding.

Check out the new photos under "View Photos".

Thank you for taking an interest in Amber!

Monday, September 28, 2009 3:54 PM EST

So yesterday I only gave Amber Ibuprofen. She was shaky on and off all day. We had a very busy day so that didn't help any. Last night I gave her more of the Natural Calm and then again this morning. NO MORE SHAKING!! I did give her just one dose last night and one dose this morning of her medicine Klonopin. I am sure she isn't supposed to abruptly stop it so I am weaning her off slowly. This is sooooo exciting. I think the Natural Calm is really helping with her pooping, which is in turn helping with the shaking. I still don't know if the two (poop and shaking) are tied together, but that is what I am thinking. It's crazy because she really has been pooping, just obviously not enough.

I was very disappointed yesterday thinking I wasn't really on to something, but I am praying this Natural Calm is the answer. If so, I think my next step is I am going to contact some kind of natural medicine doctor. I am beginning to think that is the route to go. I keep thinking there are nautral herbs and things out there that could really help Amber in all areas.

One other thing. Amber is so alert and happy. She is giggling and laughing all the time. She isn't sleeping much and is just plain old happy.

So I am happy! This is such a weight off my shoulders!

We'll keep you posted!

Saturday, September 26, 2009 3:45 PM EST

I don't know what is going on but Amber is completely normal today!!!!!!!!!! There is NO SHAKINESS! I keep looking at her because I can't believe my eyes. I didn't give her a dose of medicine last night because she was already sleeping and I figured I would double the dose in the morning when she is awake and would need it. THEN this morning I noticed she wasn't shaking so I didn't give her any, but I did give her the Ibuprofen again. Also, I have started giving her something called Natural Calm that I heard about on the internet. I got it for her constipation, but because of the name I thought it might help in other areas also!

I really can't believe this. Amber has been so alert and happy today. She is like a different person. I am praying and praying that we have figured something out. Is it the Natural Calm or the Ibuprofen? I will only give her the Natural Calm in the morning and see what happens. This is insane! I am walking on clouds. She has had the best day! And we sang Happy Birthday to Tori (her 11th birthday today) and Amber LOVES that song. She always thinks everyone is singing to her!

I will keep you posted! This is phenomenal! I think I am going to go on the roof and shout Hallelujah! (Just kidding!)

Friday, September 25, 2009 10:59 PM EST

The x-rays went extremely well this morning. Amber was very tired so there were no problems at all. We will find out the results next week.

We are able to increase Amber's dose to 1 1/2 pills three times a day. We will gradually increase this over a few weeks.

She quit breathing at school today. They handle it well, but I know it rattles everyone.

Amber is happy and I can't say there was too much shaking going on today because she more tired that usual. I don't think she is sleeping well at night.

I asked our nurse here what the game plan is when she gets immune to this high dose of the med. I guess there is no game plan. There is no other med that anyone recommends. This makes me very nervous that in a month or less, Amber is going to be jerking around like crazy and no one is going to be able to do a thing for her. The Texas Rett doctor says this is a "Rett thing". I just don't believe they will say that after they see her. I have seen quite a few Rett girls and I have never ever seen them move like Amber. This is different. I think I am going to have to ask other moms on my internet support group and do some research myself. I am a little frustrated that this is it for us. There has to be an answer. I am also thinking of contacting Kathy Hunter, the founder of the International Rett Syndrome Association. I know the Texas doctors know their stuff, but I don't think I can wait until November for them to see her. Also, I am going to suggest I send them a video to see what they think.

If I get my act together, I will try to post a video on this page.

Thursday, September 24, 2009 8:12 PM EST

Today we saw the physical medicine doctor. One of my favorite doctors of all time. She spent a great deal of time with us. I think it was like 45 minutes. She really tried to figure out what is going on. She noticed that after doing range of motion that Amber seemed bothered by her left side. Then we got to remembering how she had mentioned this left side being a problem before. She dug through her notes and found that a couple years back she mentioned Amber's left hip might come out of the socket. So we are going to get a hip x-ray tomorrow. She suggested many other things....headaches, problems in her brain, the hip, over-stimulation, early puberty (which is definitely happening with Amber), using weighted blankets to calm her (we have one!), even an ear infection. So we are going to try giving Amber Ibuprofen for a couple days and see if that doesn't help in some way. We are just covering all our bases.

In the meantime, I stopped Amber's new Parkinson's medication after her taking it just three days. She started on 9/19 & stopped on 9/22. She started crying at school on Tuesday and when she woke up Wednesday morning, she was sobbing. It was this SAD SAD cry. It was a cry as if you lost your best friend. I held her and comforted her and it seemed to help a little. I didn't give her any medicine that day and she got better and better. She is now back to normal emotionally.

Today I talked to the Texas nurse. She had talked to our nurse here. She told me what the Texas doctor said and he said we need to be VERY careful with the Parkinsons drug because it increases constipation, reduces sweating, increases Long QT, which is a problem in Rett girls (sudden death from the heart rhythym being off) and some other things that just wouldn't be good for Amber. Well, I stopped it anyway so no more worries there.

Then I called our neurologist here and spoke with the nurse. Our physical medicine doctor had already called there. I asked for Amber to get a higher dose of the other medicine that she is currently taking for the shakiness. (not the Parkinson's medicine). She is getting more and more immune to it, which is common. I will find out tomorrow if the doctor says ok. By the way, I took 1/2 a pill one day to see what it feels like and it made me very tired. Now imagine Amber gets three whole pills per day and I'm asking for an increase AND she is only 8 years old AND it is only helping the shakiness a little. Crazy!

The Rett nurse did tell our nurse here that this movement disorder is common. No way Jose is Amber going to go on like this. It is too much. It has got to be a stress on her body and we are going to figure something out! I don't think the Texas people really know the extent of this and I am so anxious for them to actually see her in November. They never actually told me it was common, but they did tell our nurse here. Our nurse here did say she learned an awful lot about RS from the Texas nurse. Great!

That's it for now. Tomorrow should be interesting for Amber getting an x-ray of her hip. She obviously has to hold still. Pray that these people are cooperative and don't tell us they can't do it, because we ARE going to get that x-ray. I usually have good experiences with Bay Park, but it only takes one person. I am thiking of giving Amber a double dose of med before we go just to relax her more. I might even give her a warm bath too.

I heard back from Boston Children's Hospital already. They need more information. I don't think they will be making any decisions for months. Darn. I meant to ask the physical medicine doctor about that drug and I just realized I forgot. Oh well. I'll be talking to her by Monday.

Thanks for visiting!

Tuesday, September 22, 2009 8:43 PM EST

Amber started crying this afternoon after being very happy all morning. I have no clue what the problem was this time.....so I guess we'll blame it on poop.

We have started a new drug, in addition to the other one she is still taking. Nothing has changed. She is still shaking and jerking. Sometimes it goes away. She definitely does it more when there is lots of activity around her. I am so frustrated with all this. The Texas nurse and our nurse here in Toledo finally spoke. Now we will wait for the Texas doctor's recommendation. I should hear from them tomorrow. I can't wait for them to actually see how she acts when we go to Chicago. When they see it first-hand, I know they will understand more what is going on.

There was a press release today about a new drug approved by the FDA that reverses the symptoms of Rett Syndrome. NO JOKE! It has never been used on humans, but it has been used on mice. I will research this some more and let you know. The clinical trial will be done at Boston Children's Hospital. I called them and spoke with a very nice woman. She gave me her email address to email Amber's information. They are not making a decision yet, but are just taking information from interested parties. I soooooo want Amber to try this. I feel VERY lucky to have looked up this doctor on the internet and to have gotten as far as I did today. I also got another phone number that I can call to get even more information. The trial will be for one year and we would have to come in for an appointment at least once a month. I know that's a stretch, but it would be so worth it. How can I not try to do this??!! So I am very excited to see what comes of all this. I almost didn't call because I figured everyone is calling, but now I am glad I did. I get choked up just thinking about at least some of Amber's Rett Syndrome symptoms being reversed. This is big news!

Thank you people for your kind words.

Friday, September 11, 2009 9:44 PM EST

I don't know what normal is for Amber anymore. I kept her home from school today. The school has never really seen a "normal" Amber so I think sometimes she isn't really shaking that much, but they think she is. Other times, it is so ridiculous how much she is shaking and jerking and moving around. There is absolutely no consistency. The medicine no longer puts her to sleep. I am afraid this is just how Amber is now. Yuck!

The doctor has prescribed a very very low dose of a medicine used on Parkinson's patients. The pharmacy won't have it in until Monday. I think he is being very cautious about this. I don't think this is recommended for children at all. I mean, kids don't have Parkinsons, right? The good news is our Toledo nurse has tried to contact the Texas nurse/doctor. Unfortunately, neither one was in. This is good though. I am so glad they are consulting with the Texas doctor now. I still have an appointment for Amber to see our physical medicine doctor here. Also, I have another doctor I am going to try in Michigan. Also, I think I will contact the mother in the United Kingdom again. I really am at a loss as to what to do.

Amber saw the dentist on Wednesday. He is still concerned about her top front tooth pushing her bottom front tooth out. Daily I push on her top tooth to get it to go in the direction we want it to go. He is going to check her next month to see if we have made any more progress. Kind of like home made braces! Ha!

I saw a sign lit up as I crossed over the bridge tonight. It was very awesome. It said 9/11 we will never forget. It brought tears to my eyes. We are so blessed to live in a free country. To this day I look at an American flag differently ever since 9/11/01.

Thank you for signing the guest book!

Friday, September 4, 2009 11:02 PM EST

Amber still isn't quite right. Some days she does ok and other days she is shaking all over. We are continuing with the same medicine. She seems to be sleeping alot, but I am trying to be patient and give this med a try. Sometimes she has these spacey looks and I think she quits breathing for a little bit. It isn't as noticeable as it was before. She seems to be in a daze and drugged, but not all the time. There really is no consistency to anything she does. She is leaning to the left ALOT. Sometimes she jerks to the left quickly. Also, she can't seem to hold her head up often. I really don't know what is going on. The nurse in Texas has been very helpful and in contact with me. They really want our neurologist here to call them, but he isn't going to. It's a touchy situation. He doesn't feel a need. The doctors in Texas aren't going to tell me what to do when they haven't seen her for awhile. Even though we see them in Chicago, it isn't the same. We haven't been to an "appointment" in Texas since 2006. They would really like Amber to see their physical medicine doctor there. When we see them in Chicago, it is for a natural history study. I know I have said this before, but I feel it is worth repeating. We may need to go to Texas in the next year if we don't get results with the doctors here. I hope to get more answers in Chicago though.

A date is set for us getting some training on her communication device. They have a session happening at Wood County Hospital on October 14.

Amber has a dentist appointment next Wednesday.

The only real good news I have to share is she is not crying.

Here is just a random pic I found of Amber standing in her walker.

Thursday, August 27, 2009 7:45 AM EST

Well, Amber is starting to get back to her old self. Lots of smiles and she is alert. We saw the neurologist this week and he has increased her med. He got to see what her shakiness looks like. He has some other meds we will try and he has put it in her chart. So now I don't have to keep running back every time we need to make a change. I just need to call and talk to the nurse and tell her what is going on and he will make a decision based on what I say. Yay! I told him it is sometimes hard to get through to the nurse and we talked about his office manager calling me about the video I sent in. He said he is was fully aware of the situation and she didn't handle it well. He said it will start getting easier getting through to the nurse because we are now becoming "frequent fliers". Ha ha. Actually, one of the drugs he is going to try later is the drug I requested the last time that helps Parkinson's patients that I heard about from the mother in the United Kingdom. See how God works? He is going to make it happen for us to try that drug!

School is going great. They are starting to get used to Amber. She has already missed a few days because of the heat. She definitely is not getting pushed near as much as she did last year. So far no breathing episodes! Go figure!

We went for speech therapy again this week. I am learning more and more about the board. Amber was able to use it with her hands since she couldn't do the eye gaze part because she is shaking so much. She got very excited and I think she will do well with her board. I will play with it a little more this week and I am going to try to download pics and music for her. We are still hoping to get a private class together. The therapists, teacher, aides and me would be part of the class. That would be very helpful.

Amber will start back horseback riding in October. I am excited to do that.

Hopefully things are slowing down for a little bit and we can have some normalcy for awhile.

Saturday, August 22, 2009 7:12 AM EST

Amber just hasn't been herself. She isn't crying, but she looks unhealthy and she is blah. Her first day of school was Wednesday. It was too hot for her. I took her in for a couple hours and then brought her home. She missed Thursday and Friday. I LOVE her aide. I LOVE her teacher. They are very nervous about Amber, but they will do fine. Lots of questions and they are trying to get to know her. Monday it will be ok to send her. It has already cooled down.

I was able to talk to the nurse in Texas. I told her what has been going on. It's funny how I forget about things and then she mentions something and I feel like she already knows what is going on without me telling her. I just voiced my concern about Amber's movements. Then she asks me if she is leaning and if she is willing to put weight on both legs. Oh my gosh! She IS leaning and Wednesday at school she absolutely would not put weight on her right leg. I didn't even mention these things and she was questioning me about it. She wants us to get some x-rays done. She thinks Amber possibly has a fracture and that it is very possible Amber isn't crying about it because she often doesn't get worked up about external pain. That is so true! She said there is a HIGH incidence of osteoporosis in Rett girls (which I knew but just wasn't thinking along those lines). Young Rett girls have the same bone density as women who are five years post-menoposal.

We also went over Amber's weight. Unfortunately she wasn't able to get in Amber's file at that time from the clinic we were last at so she only had a weight from 2006. But that weight was 42 lbs and Amber weighs 45 pounds now. Scarey. So I am going to send the info. the nutritionist here wrote up for us. I still believe something is going on that we are missing.

Why didn't I call Texas sooner? I thought we had things under control and we don't. They soooo know more than anyone here. It is amazing. It's like she can tell me what is about to happen before it happens. She did tell me they start to see these crazy movements more as the Rett girls get older.

I just want my old Amber back. We're working on it.

Wednesday, August 12, 2009 6:56 PM EST

Hello people! I have read on the guestbook and also talked to some of you. There really are people still reading this! Cool!

There is so much I have to tell! First, I got a call from the office manager at the neurologist's office last Friday. It was S-T-R-A-N-G-E. She said "You are NOT to use the email address you used to send a video of Amber". She said they are concerned for the welfare of Amber and they don't always check that email address. OK..... After she went through her lecture I told her I would NEVER use that email address again and then I went on to say that I obviously was given that information from one of their employees and had I not sent the video, we would have ended up in the ER. She said she is afraid I might take action and assume that someone is getting my email. WHAT?? Take action doing what?? I told her I felt like I was being reprimanded and that if I went by her philosopy, I also shouldn't be leaving messages by telephone because they "might" not get it. I ended up saying thank you for the call and hung up on her. She called back within five minutes and I didn't answer. Wow. On Monday I called the doctor's office and set up an appointment. I also talked to the doctor's nurse (who gave me the email address in the first place). I told her I got a phone call from the office manager. She immediately said "Don't get me started." We had a good laugh and let's just say we were on the same page. Amber has an appt. August 25 with him. This is the doctor we just saw last month. There was a cancellation so we are darn lucky we are getting in so soon. Amber is continuing to do the excessive movements. The drug helps, but it appears she is needing more and more of it. I think this is just a Rett thing, but we need to get it under control. I will definitely be telling the doctor about his Office Manager's phone call to me. It was very inappropriate.

Amber's birthday was Saturday. She is 8 years old now! We didn't make too big of a deal this year. We had cake and ice cream and we had some friends over. Amber was all smiles when we sang Happy Birthday. I know, I know, I need to change her picture on this site!!

Amber's blood and urine seem to be ok, other then the ketones which alerted us to getting more Pedia Sure into her. I am going to request those results to take to the Rett Specialists, just in case there is something we are missing. They might see something Rett related that regular doctors wouldn't see.

The nutritionist said she would get her report to Amber's doctor right away. That was last week. The doctor won't write a new script for more Pedia Sure until she gets this report. I finally received it today via fax. I have left message after message after message. My most recent message wasn't too nice and I guess it did the trick. She called me this morning and apologized for not getting the paperwork to me as she has been so busy and she has been covering for someone else. That really means nothing to me. This is very important and she needed to do it. As of right now, I still don't have the script from Amber's doctor and Amber will be out of Pedia Sure by Friday evening. So now I am hounding the doctor's office. This really is ridiculous that I have to do this. I really don't know what else to do. People are not doing their jobs!

We saw the speech therapist yesterday. She was very helpful in just giving me an overview of the communication board. It is so overwhelming. She is not totally familiar with the board, but at least knows more than me! Also, she is going to contact the company and see if we can get a private class. If we can get enough people together, they will do that. So I am going to play around with this board and see what I can come up with. As of right now, there is no way Amber can even attempt to use it since she is moving around so much, even with the new drug she is taking. I am also considering taking Amber for physical therapy. These people are so good and know what is going on in the handicap world. I need to get back in contact with them so we don't miss out on anything.

I don't think I mentioned this, but there is another Rett mom I was asked to get hold of last month. We had met once. It's a long story. I got her # from someone at the United Way and they were trying to hook us up. Anyway, when I called, the # was wrong. So they were trying to get a new # for me and that's the last I heard. So when I take Amber to therapy last night, after checking in, I turn around and see it is that mom and her daughter!!!!! She had just done a fundraiser for her daughter a few months ago and we just talked talked talked in the little time we had. I now have her phone #, email, etc. I told her I don't believe in coincidences and she said Amen! Her daughter is so adorable and can walk. She is so neat to watch. She is much more functional than Amber.

Lots going on here. By the way, last night Jay broke his nose. Playing catch with a baseball. It is broke in two places. So I was at the ER with him last night. He has an appt. Friday to see a specialist. They don't want to see him until the swelling goes down.

That's all folks!

Wednesday, August 5, 2009 4:31 PM EST

Amber is doing much better. I have only given her five doses of the new medication. Pretty much as needed. She is doing fine. Back to her happy self.

Today we saw a nutritionist. Amber should be getting 5-6 cans of Pedia Sure instead of the 3 cans we were giving her per day. I did increase it to 4 cans last week. I don't know how we missed this. Sometimes I would give her 4 cans, but wow. I feel bad that she wasn't getting enough. I still don't believe that had anything to do with the whole movement situation, but at least because of that we caught this. When we go to Chicago, they also would have caught it, but that isn't until November. We are still waiting for the blood work results.

Amber's teacher came to visit Monday. I LOVE her!!!! I am so happy. This year is going to go so much smoother for Amber. There will be four aides and the teacher in her classroom of 7. AND the principal at the school used to be the Special Needs Supervisor for the county when Amber was in preschool. Does this get any better? Amber is going to have so much fun this year and not get pushed quite so much to perform. I am so happy. I can't believe everything is working out this perfect.

My friend that is getting me information on the drug I heard about from the mom in the UK, has also talked to a doctor she works for. He is a movement disorder doctor. Again I say, could things fall into place more perfectly?? He would like to see the video I sent to our doctor. So hopefully we will be seeing him. Whoever heard of a movement disorder doctor?? But it sounds like exactly what we need!

And this verse is worthy of repeating...It's not for everyone, but for those who "delight themselves in the Lord". Because we are growing closer to God on this journey, his presence is with us more and more. It is becoming more clear to me every day.

Delight yourself in the Lord and he will give you the desires of your heart.
Psalm 37:4

Do you delight yourself in the Lord?

Friday, July 31, 2009 6:15 PM EST

We were able to get a prescription called in. It definitely has helped. It is for anxiety, but also can be used for seizures. She fell asleep immediately after getting her first dose. She is waking up now, but looks very drugged and happy. I am just starting to see a little bit the movement come back, but nothing like it was. I took a video with my phone, then sent it to the nurse's email. It worked! If I hadn't done that, I think we would be in the ER right now. The doctor wouldn't prescribe anything until after he saw the video, which wasn't until later this morning. Amber finally got the drug in her about 2:30. Whew! Now we will wait for the test results and still try to figure out what is going on.

Amber's new teacher called me today. She said the old teacher gave her the RS Handbook and she is trying to read through it. WOw. That book is like 500 pages long! She is coming to our house next Monday evening to meet Amber and talk about her needs. Sounds good so far.

I have increased Amber's Pedia Sure and am giving her more water. I still can't figure out what is going on. So far they aren't asking for me to bring her in. I guess we will just wait for the test results.

Thursday, July 30, 2009 10:16 PM EST

Amber is not doing well. The shaking and major movements are not getting better. Again, no consistency. She can not do it for awhile, but then once she gets started, she is out of control. I will be calling the doctor tomorrow and insisting something be done (like some drug to stop this until we can figure things out) or I am taking her to the Emergency Room. She is thankfully sleeping now and so the movements have stopped.

I also think I will call the Texas doctor tomorrow. This is very frustrating. It is taking it's toll on her. She seems to be very hot because of all the movement, which is not a good thing for her.

Will keep you posted.

Wednesday, July 29, 2009 1:12 PM EST

Something's not right with Amber. She is flopping around like crazy most of the day. Some days are better than others. There is no consistency. Sometimes she is extremely happy and sometimes she's not. I took in a urine sample for her to get tested for a Urinary Tract Infection. I am waiting for a call back on the results. No one seems to know what is going on. I emailed my internet support group and I didn't get much of a response. Yesterday we thought her feet were very hot. Today she looks white. She had a non-breathing episode this morning and was flopping around like I couldn't believe. I had to hold her down and she still was able to get out of my grasp. She has been sleeping ever since. Her neurologist is on vacation, but he does have a fill-in. I think my next step is I am going to ask for bloodwork done on her. Hopefully today since it is my only day off.

I just got the mail and we got our bazillion school papers I have to fill out. She has a new teacher AND a new school this year. Thankfully it will be at Olney, which is where she went for preschool. BUT it is a new teacher. I am ready to meet her TODAY. I immediately had a sinking feeling when I read that. I am sure everything will be fine. I just can't help but have anxiety over this. I hope the teacher will be good and understand Amber.

I am waiting for a call back to get an appointment for speech so she can start using her communication device.

Sunday at church I was talking to a friend and it dawned on me she is a nurse and works with Parkinsons patients! So I asked her about the drugs I am interested in Amber taking. So she has already emailed me a bunch of information. I just need to go through it and then get it to the doctor. Wow! That sure did help. I would have never found the information she found for me.

Well I am off to make some phone calls.

UPDATE: Amber has a high amount of ketones in her urine. She does not have a UTI. I am told the ketones could mean she is not getting enough nourishment. We will be meeting with a nutritionist now. I have always been told the Pedia Sure she gets can sustain her. BUT she has been growing and she might need more. We can't wait until November to see the Texas doctors so we will be doing something now. In the meantime, I took Amber back for bloodwork to see if we find anything else. She just isn't herself and the flopping around is ridiculous. Imagine them trying to get blood from her. It took three of us to hold her down.

I am happy to hear we found something at least. That gives us something to work with. All because I asked for a urine test!

Wednesday, July 22, 2009 8:01 PM EST

I was able to get Amber into the dentist today! Wow. And the lady was even nice about us missing our appointment. Because of Amber grinding her teeth, it is pushing out a bottom tooth, which is a permanent one. Each day we are to push out her upper tooth a little so that it goes on the other side of her bottom tooth, thus pushing it in instead of out. No guarantee it will work, but it's worth a try. The dentist said he has a friend that is an orthodontist and works on some special needs kids. That will be our next route. I can't imagine they can do anything for her, but the dentist said I might be surprised.

We also had the appointment today regarding adding on to our house and what is able to get paid for. There is just too much to tell. There is a family in another city that just had an addition put on. It really sounded awesome and I am hoping they will let us come see it, or at the very least see pictures. We're still not sure what we want to do and want to make sure we get it right. We are looking into lifts that have a tracking system along the ceiling, a handicap accessible bathroom, a bedroom for Amber and a bedroom for us next to hers. Also, an entrance straight into that area so it would kindof be separated from the rest of the house. This would mean Amber might be able to have a nurse come in to care for her while the other kids are at home. At the present time we are not allowed to do things that way because it would be like the nurse "babysitting" the others. Right now I can't imagine bringing someone in I don't know and letting them stay with Amber, but there's always cameras!

Amber slept quite a bit today. She needs to poop. I am starting to see that if she doesn't go regularly, it makes her tired. Funny how the body works.

OH! One more thing. The woman that showed up for our meeting goes to our church!!!!!!!! What a surprise. I had even talked to her on Sunday, but we didn't know each other's name so we didn't make the connection! Like I always say, I don't believe in coincidences. God is with us every step of the way.

Delight yourself in the Lord and he will give you the desires of your heart.
Psalm 37:4

Tuesday, July 21, 2009 9:46 PM EST

Amber has been very shaky for about a week. It is hard to hold her. I am thinking it is just another thing she is now going to do. I can't blame it on any medication since she isn't really taking anything. She has always been a shaky girl, but this is really extreme. She even twitches in her sleep a little. I will probably ask my internet support group, but I have a feeling there isn't anything I can do about it. This seems to be the perfect time to try out that drug for Parkinson's patients. So I will try getting in touch with that mom this week so I can get more information to give the doctor.

Tomorrow we have a therapist coming to our house to talk about getting our bathroom adapted, adding on and whatever else we might need for Amber in the future. Also, in finding funding for us or help with a fundraiser. I am really curious to see what info. she can give us.

On the plus side, the shaking doesn't seem to bother Amber. She is continuing to be happy.

Amber had a dentist appointment Monday and I totally forgot about it. And then I forgot to call today to tell them I forgot! I am dreading the call. She really needs to get in and it will be months now. Not to mention, the lady that schedules isn't very friendly so I know I am going to get in trouble for this. I feel like a little kid!

Amber ate Taco Bell and ice cream today.

Thursday, July 16, 2009 8:50 PM EST

Today I received a call from an occupational therapist. She was referred to us by the waiver program who can adapt our house, bathroom, etc. for Amber. She seemed VERY informative and said she can help alot with finding funding to help us out. I am excited to talk to her. We have an appointment Wednesday. I can always tell when I'm talking to someone who knows what's going on and she certainly does. She is exactly what I need. I want someone to help me figure out what we are going to do with our house for the future AND how to pay for it!

Amber had some pizza and gyros for dinner. She LOVED the gyro meat. Her first time having it.

Wednesday, July 15, 2009 7:36 PM EST

Amber saw the neurologist today. He was totally ok with me taking her off the seizure medicine. Yay! We don't have to see him again for at least six months, or longer, my choice. I asked him about two different drugs I had heard about from another mother. He knew what both were and said they were used for Parkinsons patients. He wants me to find more info and maybe some case studies about it pertaining to girls with Rett Syndrome. Also, he would like me to ask the Rett specialists. We were in and out of the appointment in 50 minutes!!! This is unheard of. I usually wait 50 minutes or longer just to see him. Mariah went with us and insisted on pushing Amber. She was quite the helper and turned a few heads. Amber was all smiles having her little sister push her around.

I have done nothing with the communication board. It weighs heavily on me to get moving. I did get the prescription so now I need to make the appointment with the speech therapist and try to fit it in my schedule.

Amber has been giggling alot today. She had McDonalds french fries and some potatoe soup. And of course, some coke with those fries. She doesn't like hamburgs real well for some reason! Nothing else going on.

Thanks for signing the guestbook you faithful friends.

Thought for the day: Those who anger you rule you.

Wednesday, July 1, 2009 7:42 PM EST

Amber was fine Sunday morning, after her bad day on Saturday. She has been fine ever since.

Last night Amber spent the night at Grandma Bonnie's while the rest of the family went to a concert. This is the first time she has been away from all of us all by herself. She did great and actually slept most of the time. She was excited to see me this morning when I stopped by to see her before going to work.

I was able to email the owner of the therapy center where Amber used to go for therapy ages ago. These are the people that were at the communication clinic and helped us get the communication device. An employee helped us, but today I was able to email back and forth today with Ann, the owner. She said she received the call from the communication company and wasn't quite sure putting the device on the wheelchair was the best route to go. Bingo! I was wondering that also. Which is why I emailed today. So after emailing with her further, she said that unless Amber is in her wheelchair 100% of the time, she absolutely should not get this attachment. Wow. She was not actually in the room when we ordered this device, her employee was, the speech therapist. Anyway, I am so glad I started questioning this after I had my little tantrum. Amber spends alot of time sitting at a table when at school. Sometimes my mind works on a delay, but it usually works! We will get a carrying case for it and pull it out when it can be put on a sturdy table and she can sit in front of it. And the best part of all is Amber can go to therapy there and THEY will teach her how to use it!! Whoo hoo! Now to figure out how we can fit one more thing in our schedule. Funny how things work. It actually was a blessing this attachment didn't get ordered!

I am thinking this weekend I just might plug this communication device in and give it a try. I am sure the kids can figure it out for me in no time.

Thanks for signing the guestbook TWO people! Come on you guys, you can do better than that! I promise I'll update more if you sign the guestbook more. Is it a deal?

Saturday, June 27, 2009 11:49 PM EST

Today wasn't a good day. We went camping and Amber woke up very agitated. She pretty much whined or cried the entire day. I finally brought her home this evening and left the rest of the family camping. I think she had to poo, but once she did, she still wasn't ok. I gave her everything I could, including Tylenol. Thank goodness she finally fell asleep. I am hoping she will wake up fine. This hasn't happened for awhile.

We did not receive the part that hooks up Amber's communication device to the wheelchair. The lady at the company tried to tell me it was never ordered. I dug out my paperwork and found that it was on the form. Oh, that just says it's what we want. The speech therapist has to actually request that and put it in the assessment of Amber. Also, the doctor should have wrote it on the script. I just listened and then when she was done with her explaining I said "So I have to now kick into gear and do what the doctors and the therapists and the people at your company neglected to do, correct?" She said yes. I think she heard the frustration in my voice, because she called me back 15 minutes later and had made the arrangements with the therapist to get this moving along. That was nice to have someone go the extra mile instead of making me do all the legwork. I appreciated that. But doesn't it seem silly to see it on the application and NO ONE catches that they didn't do what they were supposed to do. Even the people at the company we bought this from could have given us a heads up that not all the paperwork was correct in order to get this. I just assumed everyone was doing what they were supposed to do. Their the experts, right?

Then my next complaint is there is no training for Amber's particular device at Bay Park like I was told when we decided to go with this device. Oh there's training there from that company. It's just not training for Amber's device. How convenient. So for now I can do some online training, which is a three hour session. I will try to do that in the next few weeks. I am ready to get moving on all this.

Amber has a doctor appointment next month with the neurologist. I am going to ask him about a drug I found out about from another mom in the United Kingdom. She said it REALLY controls the seizure-like episodes. She said it also helps with tremors and coordination. It is not so well known in the US, but it is where she lives. I can't wait to see what our doctor says. I even have her doctor's name and # if our doctor would like to contact him. I am hoping our doctor doesn't poo poo this. I really want to try it and I'm not going to give up very easily.

Amber's legs are HAIRY. I am finding all girls with RS are hairy. I have pondered shaving her legs. Who ever heard of a 7 year old getting her legs shaved! It really is getting noticeable so I think that is what I am going to do. I may take pictures. I hope that's ok. I'll have to ask Amber!

Could someone please sign the guestbook? I know you guys are lurking out there, I just don't know who.

Tuesday, June 9, 2009 76:09 PM EST

Amber is doing fabulous. She is VERY happy. She wakes up every morning laughing. She is enjoying her time at home and not going to school. She seems to be sleeping much less. Probably because school really wore her out.

Well, I was going to say Amber quit grinding her teeth. We all couldn't remember the last time she had done that. But wouldn't you know, she is sitting next to me and is grinding her teeth!! I can't believe it.

Amber is still not on any seizure meds. She has episodes periodically, but I don't believe they are seizures. She is still able to maintain eye contact, unless she quits breathing and almost passes out. That's when her eyes usually roll back. I am so used to it so it really isn't a big deal. I made an appointment for her with the neurologist in July. I never did let him know I took her off the medicine. That appointment should be an interesting one. I hope I don't get yelled at!

I met with a caseworker a couple weeks ago. She is with a program for the county. Just one of many programs. She usually helps people transition into homes when they turn 18, but she is still available to help us so I am, of course, going to take full advantage. We talked about getting an addition added on to our house. It is getting harder and harder to carry Amber upstairs for baths. Also, we try to take her upstairs once in awhile to be with the family if that's where we are all at. And I have to say, her sleeping in the living room isn't the best scenario for us, but it will do for now. This woman is going to help me meet with another woman who is also a caseworker that would help modify our house. They will NOT add on to the house, but they will modify after we have added on. I need to know everything before we even attempt any of this. It is a long ways off, but I need to start thinking about it. We definitely don't have the funds and hope to do some sort of fundraiser to help out. I think it is the only way. A few years ago I said no way to a fundraiser, but now I am seeing Amber grow and realize we are going to be in big trouble if we don't plan ahead.

Amber is maturing and is progressing ever so slowly. She improves in all areas by just a little bit each year. She is able to pick up her toys a little better and doesn't seem to be so frustrated.

So that's it for now. Thanks for checking in.

Saturday, May 9, 2009 6:53 AM EST

Amber is doing well. She had a few rough days last weekend because she was having trouble pooping, but she is better now. She has been very attentive at school and doing well. Lots of giggling and laughing.

I have done absolutely nothing with the communication board. They have an online tutorial. I know once I get started, I will be able to "get it". I may even have the kids help me out. You know how kids are with electronics! It is all so overwhelming for me. I just want someone to show me how to use it, not have to teach myself! Hopefully the next time I post I can tell you we are using it.

As of April 16, Amber is completely off seizure medicine. I actually have seen a decrease in her episodes. But I have noticed some of them are more intense. I am continuing to research this. Alot of the moms on my internet support group are going through the same thing. They have the same episodes and they are taking their daughters off the meds. One mom even videotaped her daughter and I got to see it. It is basically like Amber's episodes. Also, a mom in the United Kingdom says a drug she gives her daughter has helped tremendously with the episodes, tremor and coordination. She said the episodes have stopped completely! In order to try this drug out, I absolutely have to take Amber to the neurologist and talk with him. I can't just call him up and ask for a script. Right now we are looking at July before we can get in to see him.

Our church Life Group that Karl and I head up went to Prescribed Pediatric Center (where Amber attends periodically) and donated Easter Baskets. We then cleaned three of their rooms. Our whole group, including kids, cleaned. It was very rewarding. We cleaned these rooms from top to bottom in 1 hr. 45 min. We washed down walls, cleaned out cupboards, wiped down cribs and got in every nook and cranny. It was fun!

Amber has been moving around so much at night. I usually find her at the opposite end of the bed with all her covers off by morning.

Amber's last day of school is 5/29. I have no clue what I am doing with her this summer. She will probably go to PPC a couple days a week. If all goes well, Amber will be in her same classroom one more year. There is a slight possibility she will have to move to another school. I have a feeling if she does, I will find out at the last minute. It is all based on the age range in the classroom. There has to be something like no more than a three year span so if a child from another district comes in and is young, that would bump Amber out. I'm not going to worry about it now. I dread her going with a new teacher. You just never know what you are going to get. A kid that stops breathing on a regular basis can really freak some people out. I am so used to it that it is no big deal to me.



Tori loving on Amber again.



Tori and mom at her Honor Star Crowning. Tori went through years of memorizing scripture and earning badges and she earned her crown for this. Hey! Where's the crown? She must have taken it off for this pic. We had professional pictures taken, but we have not received them yet.

If you haven't signed the guestbook in awhile, let me know you are still reading this. I would love to know who you are.

"....sometimes our humble hearts can help us more than our proud minds." 1 Corinthians 8

Sunday, April 26, 2009 8:13 PM EST

Effective April 15, 2009, Amber is completely off all seizure meds. I slowly weaned her off and she is doing fine. She still has her episodes, but not as much! I didn't tell them at school until a week after she was off them because I wanted to see if they noticed a difference without knowing. She seems to be happier and more alert. Also, the air and gassiness is better, but not totally gone. I didn't even tell the doctor I was doing this. Our next appointment is in July.

Amber's communication board is here! It is a computer. I don't even know where to begin. I need to contact the company and get some training, because I am clueless. It comes with a keyboard and a computer screen. I don't want to mess something up. I am amazed it is already here.

Right now Amber is laying on her belly on the living room floor. I put toys out of her reach,. Her face is very red and she is working very hard at getting herself around. I need to do this more often! She is trying to crawl to her toys and she is making a little progress!

The weather has been beautiful, but the heat bothered her today. By the time we got home from church, she was very uncomfortable, warm and red. I am really concerned about the heat and how they react to it at school. I still don't think they take me seriously about it. I was at school on Friday and it was very warm. It is supposed to cool off this week so that is good news. The school is shut up all weekend so I have no doubt it will be very warm there tomorrow.

Amber got her hair cut. I know I really need to update with some pics.

Thank you for still seeing how Amber is doing.

Monday, April 2009, 7:06 AM EST

Clint Black won $20,000 for the International Rett Syndrome Assoc. on The Celebrity Apprentice last night!

Wednesday, April 15, 2009 9:06 PM EST

Amber's communication device got approved! They will be shipping it out in three days. Wow! That was quick. I am used to waiting much longer than this for things.

We have a student coming to interview us on Saturday. We do this every year with a student from BG.

That's all!

Tuesday, April 14, 2009 8:39 PM EST

Amber had a very off day today. She was shaky and looked a little pale. She was happy off and on, but never crying.

She went to PPC last week one day. Her first day back to school after Spring Break was today. I think getting back into the swing of things was hard on her.

All is well here. I am continuing to wean her off her seizure med. I am hoping for the best.


Who angers you controls you.....

Wednesday, April 8, 2009 9:08 PM EST

The girl's got gas!! Sometimes Amber's belly gets really bloated from all the air and I just love venting her through her tube and hearing all the air escape. It's amazing. She doesn't seem to be in any pain.

I have skipped a few doses of her seizure meds. She seems to be doing fine. Tomorrow she goes to PPC. Our church group is delivering Easter baskets to all the kids in the morning. I am sure Amber will enjoy seeing old friends.

Tonight she watched some videos of Spongebob and she laughed hysterically. She is very happy tonight and can't seem to stop the giggling.

Saturday, April 4, 2009 12:41 PM EST

Amber still has gas and is burping alot. We got her tube changed to a different size, but the surgeon didn't feel that was the problem. And obviously it isn't since she still is going to town with her bodily functions. She just must be swallowing alot of air. She doesn't seem to be in any pain so all is well.

I submitted more information for the communication device so now we will wait.

Amber was sent home from school last week with Pink Eye. She missed four days of school because of it. It was such a hassle to get a script from the doctor. This is the same doctor's office that took over a month to get me the paperwork I needed. I honestly don't know what their problem is. I am so frustrated with them. I finally got the script after stating I didn't want to be put through to someone's voicemail and I THINK I spoke with a supervisor. This was after numerous phone calls over a couple days. If I had more time I would make an appointment just to talk to the doctor and complain. I think it is time to find a new doctor. It is a shame that I would leave a doctor because of the office/nurse help, but I can't be wasting my time with these people anymore.
Amber missed four days of school, which was totally unecessary. School would not allow her back until the Pink Eye was being treated.

Today Amber is sitting on the floor with her baby doll and toys all around her. She is very happy and is enjoying her play time. Everyone in the house is gone except for the two us. That doesn't happen very often.

I am hoping to get Amber's hair cut very soon. It is getting so long and thick. She needs a different style.

Today I spoke with a mom that I met a few years ago. She lives in Florida. It was so nice talking to her. She now has five kids just like me. We are hoping to get together at Disney World in a few years. Wouldn't that be a sight to see us with our ten kids, two of them having Rett Syndrome! We met them at Disney World before and I hope we can do it again some day. Her daughter is having the SAME episodes as Amber. Stops breathing and all. Her doctors also say they are not seizures. She is questioning why Amber is still taking seizure meds because her daughter is not. I have questioned this myself, but now I really am wondering. I am considering weaning Amber off the seizure meds without telling the doctor. We will see. I have to think this through. It's a slow process anyway, so I would notice any changes and could get her back on it before she was totally off. I am considering doing this on my own because he doesn't want her off the meds. The mom said we don't know if the seizure med, even though it is a low dose, is hindering Amber in some way. She said when her daughter did take something, she immediately stopped walking. This has really got me to thinking. What if Amber could do even better if she wasn't taking this drug?? What if....

Thanks for stopping by!

Saturday, March 21, 2009 6:25 AM EST

Amber has air and gas BAD! It somes at the goofiest times and she just burps or stinkies. They are long and drawn out. We have an appointment with the surgeon who put her g-tube in. I have no clue if he can help us, but it is worth a try. Also, her tube just doesn't fit right anymore. The good thing is Amber is getting this air out. If you have been following us for awhile, you might remember we opened her tube up 24/7 for quite awhile because she had so much air. At least we don't have to do that now. It was such a pain. I have a feeling this may just be from all her air swallowing and nothing else, but I want to make sure.

I needed some paperwork filled out from Amber's doctor for the school. I have been trying to get this paperwork from them since February 11. I finally got it yesterday. I kept making calls and faxing these papers. Yesterday I was determined to get an answer so I kept pushing it. I think I got lucky and talked to a supervisor and I got results. Also, I wrote a letter and faxed it to the doctor's office. This is Amber's Pediatrician that I heard was so good and I had her neurologist get us in a couple years ago because she wasn't accepting new patients. I am not happy with the nurse/secretary end of our relationship. I may have to look for another doctor if this keeps up. I just don't have time for the incompetence. Frustrating! I will talk to the doctor and our next visit.

Amber is continuing to be very alert and amazing. One day last week Hayley put some cut up apple pieces on the table and Amber was able to pick them up and put them in her mouth!!!!!!!!!!!!! We were so excited for her. She then had trouble keeping it in her mouth because she wanted to keep her hand there instead of taking it out. She has definitely improved with her coordination and reaching and grasping. So that got me to thinking that it all ties in with the teacher teaching her how to write! She has to grasp a pencil. She really is doing well.

I need to get the papers out for the communication board. I just haven't had time! We are crazy busy this month!

Amber is continuing to amaze me and is maturing every day. Her walking is getting better and she can now stand at a table unassisted, but being watched very closely!

Saturday, March 14, 2009 7:01 AM EST

You were praying for me! The IEP meeting went well. I can't believe it. If there were any time that it wasn't headed in the right direction, somehow we came to an agreement. Wow. I am so glad I'm not sitting here complaining. It was almost two hours. Everyone is on board with Amber getting the communication device. I am going to use the assessments from the IEP meeting to submit to insurance and we will take it from there.

I guess I understand a little more why it might not be such a bad thing for Amber to learn how to write lines or try writing her name. I still believe she will never be able to do that, but using those muscles in her hands is good for her. She needs to keep using them so she doesn't get atrophy. (did I spell that right?)

After the meeting I went in to visit and Amber was very happy. I think that is the first time I have gone in the classroom and not been bothered by something.

Miss Kristin visited Amber on Thursday.



Of course Amber remembered her and was very excited.



Amber is standing up at the dining room table. Miss Kristin was Amber's preschool teacher.



We finally got Amber's new arm splints. They are larger and I LOVE LOVE LOVE them. They will work much better because Amber is quite the sneaky little thing in getting her hands in her mouth.

Thursday evening I went to see the seizure detection dog. A professor from UT had him and spoke. VERY interesting. Although I'm not really interested at this time in getting another dog, I learned some valuable information. The professor was VERY helpful and gave me some ideas I had never thought of. I loved that he told me absolutely if Amber can respond when her name is called during one of these episodes, she is not having a seizure. I just needed to hear that from one more person. What he did say is there is such thing as a pseudo seizure that doesn't show up on an EEG. I will be investigating that. He also told me when we see these episodes come on, we should try to pull her out of it by calling her name and helping her to focus. I had never thought of that. Then I met another mom who has TWO boys with autism and that have seizures. Can you imagine? She gave me the name of a doctor in Michigan who helped them with the seizures. Not sure we need to see him at this time, but I will definitely keep him in mind. The mom and I exchanged emails.

So that's it. All is well. Amber continues to have gas and burps alot. The school nurse asked about Amber's gall bladder. INTERESTING! There is a high incidence of gall bladder problems in girls with Rett so I will definitely check into this. If that is the problem, there will eventally be some major pain in Amber's future. I am going to get Amber an ultrasound and also find out from other moms what their girls symptoms were that had gall bladder problems.

It's the weekend! Where is Spring?

Wednesday, March 11, 2009 8:04 PM EST

Tomorrow we are going to a place where they have dogs that work with handicap people. We are going to meet a dog that can detect seizures. I really know nothing else. I am very interested to see how the dog reacts to Amber and I hope she has an "episode" so we can see if the dog thinks it's a seizure or not!

Amber's IEP meeting is Friday. I have tomorrow off and plan on spending a good deal of time preparing for it. I have questions and from the phone calls I have received, I am afraid it isn't going to go well. Remember the last time I said that? I was right. I have some things I wold like to address. I still get the feeling everyone thinks Amber is having seizures. I honestly don't know how to handle this. What makes these people more qualified than the doctors in determing this? And my next question is, if she is indeed having seizures, then what? What does that mean? What would they like to be done differently? Wish me luck!

Amber is still very bubbly and gassy. She has been doing well and has been happy.

This morning I was getting ready for work. Amber was laying in her bed and kept looking at the shelves behind her. She was staring at her video player. It was sooooo obvious. She wanted to watch a movie, which I sometimes let her do if it isn't a school morning. I told her she couldn't watch it, but I was so impressed that she was trying to tell me what she wanted. Maybe I should have let her.....Amber is really maturing. I am beginning to realize that Amber is getting older and so she is maturing just like any other kid would. She is just doing it at her own pace. It is really neat to see her change.

I am hitting a wall with the school helping me with an assessment for Amber to get her communication device. Maybe I will get some answers at the IEP meeting. The speech therapist thought we should meet with the company that provides the device (we've done that) or check into some other companies that way we can see which one, IF ANY, are appropriate. IF ANY??? Then I get a call from the physcial therapist and she doesn't think she can help me because she would do an assessment for walking and things like that (or the inability to use her hands which is why we need a device that allows her to use her head, not her hands. HELLO!) so that conversation didn't go well. The insurance company is looking for necessity. So now that leaves me with the occuational therapist. Hopefully she will be more cooperative. I called the physical medicine doctor and she called me back and was VERY helpful. She is the best and is very involved with handicap kids. She is going to see about me getting an assessment. Honestly people, I get so frustrated with the school. I really have no desire to ask for their opinion or their permission. We're not on the same page when it comes to Amber. They're still trying to teach her how to write! I just want an assessment. They are not paying for this device so why do they feel they have a say in what we get?? I've done my homework and I know what I want. I have a doctor that has recommended it and I went to a communication clinic for this. Amber has used this device!!! She can do it!! I'm not going to fight them too hard on this. If they don't want to help us, I will find someone that will.

There is so much more I could tell you, but I am just going to stop here. I will hopefully update in a couple days with some good news. Pray for me that the IEP meeting goes well.

Monday, March 2, 2009 7:42 PM EST

This is an amazing video. For anyone who has ever had any doubts, Jesus really does give us peace no matter what trials we are going through. Thanks Linda for making me aware of this amazing person!

You will have to copy and paste this.

http://www.youtube.com/watch?v=a8Cwx2UbTJA

Saturday, February 28, 2009 11:31 AM EST

Amber seems to be back to normal. I gave her Milk of Magnesia Thursday evening and it really seemed to help her. This morning she is watching an old Daffy Duck DVD and laughing hysterically. She is cracking us up. She is giggling and shrieking as if someone is tickling her.

I don't really know what her problem was in the last week, but I am glad she is back to normal. The Milk of Magnesia really seemed to do the trick.

Again, thank you for signing Amber's guest book. I know there are many more of you reading it because you tell me!

Wednesday, February 25, 2009 7:27 PM EST

Here is a neat story.

http://www.timesleader.com/news/Hitting_the_road_for_great_causes_02-24-2009.html

You will have to copy and paste. I guess this trucking company will donate one cent per mile that they travel to the Rett Syndrome Association. Neat!

Amber is still having some serious air in her belly. I called school today and was told by an aide that she was doing fine. She said she had pooped and peed in the toilet. Then when I read her notebook it says she just missed peeing in the toilet twice It also said she cried every two hours, but as soon as they got the air out of her belly, she stopped.

Holy cow could someone get their stories straight!

Tuesday, February 24, 2009 7:14 PM EST

Amber was really off today. I kept her home from school. She wasn't happy when she woke up. Then she was very happy. Then this afternoon she was whiney. I let air out of her belly because it was very HARD. I massaged it and you could hear the air just bubbling out. It really helped her. I don't know why now she is having this problem. I still wonder if it has to do with her g-tube not being the right size since she has grown. It is the same size tube she got when she was three. It might be ok, or it might not.

I bought this product called Colon Cleanse. I tried it on myself and really liked how it worked! So I gave Amber some today. I am going to lay off the Senna and try this product for awhile. I think she needs a change in her poop medicine. This isn't the first time this has happened. What used to work no longer seems to work. She seems to be struggling more and I am just covering all my bases. It is quite scarey to try something new on her though. This is completely natural and I am hoping it might help with cramping and air in her belly. This is all a guessing game!

Today I did the dental panel presentation. It went very well. I am getting more and more comfortable with it. Karl went with me also. One of the students there looked so bored, but at the end he was the first person to ask a question and said how much he enjoyed the presentation and thought it was very useful for students. That was great to hear. Also, everyone fills out an evaulation form and we always get high marks. That is very encouraging.

Amber is sleeping now and it really is quite easy for me to calm her down. Once I get the air out of her belly, I love to hold her and cuddle. She just eats it up and it is quite obvious she loves the attention. The problem is I'm not always here. Also, when I send her to school, I know they pretty much make her push right through it and keep her going. I can't stand that! I want her to be pampered when she's not happy. Why not!

Thursday, February 19, 2009 8:15 AM EST

Amber has been having a rough couple days. She is burping alot, has gas & is having trouble pooping. Also, she is having tons of episodes where she quits breathing. Not sure what is going on. She came home early from school yesterday and I kept her home today. So far today she has been happy, but not herself. She has already quit breathing once.

I made an appointment for her to see the doctor that put her g-tube in. The tube is so floppy and just doesn't seem like it fits right anymore. I guess it's time to get a different size.

Amber's IEP meeting is Friday, 3/13. I need to figure out what I want changed and put it into her IEP. I still don't like that she is learning how to write.

I am still working on getting her communication board approved. Now her Physical Therapist has to write up something to show why she needs it.

The wheelchair is working out great. Our van is still being worked on. I still don't know if it is major or not. I think our "mechanic" has been very busy and that is why it is taking so long. The price we have to pay to get it done cheap! Thank goodness we still have our other van and it runs!

Tuesday I am doing another Panel Discussion with Project DOCC. There were five of us selected out of 17. This will be a dental panel so I will talk about Amber's dental issues. It was somewhat disturbing for me to find out that one of the other panelists had a bad experience with a dentist and it was ours!!! So here I am praising our dentist while she is sitting there thinking he is an idiot. Crazy!

Thank you for everyone's guestbook entries. Wasn't that video great that Hayley did! We posted it on Facebook and got a large response, but Facebook just removed it because of copyright laws I think because of the song we used! Oh well!

Thank you to everyone for reading this journal. I really really do appreciate your interest.

Saturday, February 7, 2009 6:10 PM EST

Today I sat Amber on the toilet. I know she needs to go poo, but she didn't. I told her I was going to take a picture of her on the toilet and how would she like it if everyone saw her. She started laughing. I got her a bumbo seat for the toilet. It works great! I can sit her there and she can keep herself upright without falling all over.

Thursday I visited Amber's classroom. I'm just not happy with the things I saw in the short amount of time I was there. I didn't say anything. I have some ideas. I don't really want to share at this time because I'm not sure who reads this. I'm starting to feel my protective feelings rising again for Amber. She is so precious and I don't want her to go through any more than she has to. Am I over-protective? Do I baby her too much? SO WHAT! I'm really not interested in anything other than her being happy and pain free. Everything else takes a back seat. They are continuing to teach her to write. She has breathing episodes almost always at this same time every day. I am looking over her IEP again and seeing what EXACTLY it says. This story to be continued......

I hope you get a chance to watch the picture video above that Hayley made. I get choked up every time I watch it. Every time I hear that song, I think of Amber. The song goes both ways. We are her eyes, ears and voice. But she also has made me who I am today. I would be a very different person if it weren't for her. She has given me strength and compassion I never knew I had. I'm a better wife, mother, daughter and friend because of her.

Wednesday, February 4, 2009 8:01 PM EST

Amber stayed home from school yesterday. She felt funny. Sortof clammy. And she wouldn't smile. A few hours later she was up and smiling and happy. Her sisters say Amber likes to trick me and didn't feel like going to school.



I love Amber's weighted blanket. I think it gives her security and helps her not move around so much at night.



Amber loves spending time with her daddy.



Amber was able to hold on to the couch for a full minute on Sunday! She stood all by herself and was enjoying her accomplishment!

Amber is peeing in the toilet at school on a regular basis. She is also continuing to breath hold. I want to check on her at school, but I just haven't been able to fit it in. I will soon.

Our van with the lift is in bad shape. We have someone looking at it. Karl is afraid it is something major.

I found out the man that gave us the van passed away last May! I just recently found this out. I think he had a stroke or a heart attack, or something like that. It was quite a shock to hear he had passed away.

Thank you for signing her guest book people!

Saturday, January 24, 2009 4:34 PM EST

Hi all. Amber finally got her new seat for her wheelchair. It is awesome. She sits very very nice in it and it looks so comfortable. I will post pictures another time.

Yesterday Amber had a breathing episode so bad that school called 911. She never passed out, but I guess it was bad. Nothing else to say about it. This is what she does. I wasn't too concerned, but I did ask what she was doing when it happened. They were just sitting down to do writing. Hmmmmm. Amber is never going to be able to write but yet she is still being taught this. Of course it stresses her out. She can't do it! Time to pay a visit to school again.

Otherwise Amber is doing well. She is happy and I can't say how much I love the wheelchair. She looks so mature and sits up so straight in it.

Sunday, January 18, 2009 6:06 AM EST

Amber finally pooed, but I think there's more just ready to burst forth!

Last night we had Amber upstairs with us in our bedroom where it was extra warm. She was still up at 11pm. We decided to just let her sleep up in the girls room since we already had her upstairs. After putting her in bed, I immediately fell asleep only to be woke up by Tori ten minutes later saying something was going on with Amber. She had quit breathing and then was thrashing around once she started breathing. So then I went back to bed and of course couldn't fall right back to sleep so I checked on her again. She was wide awake just looking around. I really can't explain it, but she was acting different. So I was a little concerned. Some time during the night I checked on her again and she was awake!! Then I checked on her at 5am and she was awake!!!! I am wondering if she ever slept last night! This is just so strange. Normally she coughs to get my attention, but she never did that. I am afraid that I might have really messed her up by keeping her upstairs. I know there is something more than just that going on because other times she has fallen asleep in our bed no problem, but not last night. Many questions. No answers.

I will be curious to see if she sleeps today!

UPDATE: 1/18/09 6:37 PM EST

Since coming home from church, Amber has been sleeping all day. She has had quite a few breath holding episodes. Still not sure what is going on, but she seems to be different and not herself.

Is anyone out there?

Saturday, January 17, 2009 9:52 AM EST

Amber is on her third day of not pooing. (Isn't that a much better word than poop?) Medicines aren't helping right now. I am waiting for the big blowout. At least she isn't crying or in pain. We did have to pick her up early from school on Wednesday (I think that was the day) because she needed to go and was crying. So she has been having some issues with poo. She has missed quite a bit of school because of snow and/or cold. It is all a blur. Will the cold ever end? I heard yesterday it was -11. My hands are freezing! I keep two pair of socks on Amber. It is hard to keep her feet warm. Very poor circulation. I also heat up a bag in the microwave and warm them up that way.

Nothing else going on. I am hoping everything works out with the new wheelchair.

Saturday, January 10, 2009 9:07 AM EST

Hi people!

How was your Christmas? This year (or should I say last year) was probably the best Christmas I ever had. No kidding! I had to be organized because I worked alot in December and I guess that helped. It was great getting together with family and I wasn't stressed!

OK. On to Amber. She is doing great and seldom ever cries. Probably my main goal in life. So she is doing good. She has a tooth coming in right in front where the others were pulled. I'll have to take a picture. She's back to school. She seems to be having those episodes in the morning again. It really is part of life for her, BUT something also could be triggering it and I want to make sure.

Amber got a Fisher Price DVD player that can really take a beating. She LOVES it. She gets to watch her Baby Einstein videos on it and if it falls to the floor, it is still good to go.



Yesterday we received a blanket I had ordered for her. It is a weighted blanket. She got to use it for the first time last night. I think she really liked it. It is very heavy (I forget, but I think maybe 8 lbs??). When Amber is sleeping, she often is jerking and rolling around. Most mornings I find her completely turned around in bed. Also, I think the weight will just help her control her body a little more. This may sound crazy, (you're used to it, right?) but I don't think Amber always has a sense of what is going on with her body. For instance, if I put a pea in her mouth, I don't think she really knows it is there. She will just let it sit there. She needs a large spoonful of food. Anyway, back to the blanket. The blanket was handmade and I found it on the internet. I am not sure how soundly Amber is sleeping at night and I think this will help.

She had a dentist and doctor appointment this week. Just checkups.

Amber's communication board was rejected by insurance. We have to provide more information. I think it will get approved, we just have to keep submitting proof as to why she needs it.

I called about her wheelchair. They say all parts are in except one, so they went ahead and scheduled an appointment for her. It is in a couple weeks. I seldom use that chair if I can help it. It has been ONE YEAR since we started this process. Next time I will be on top of things more and not just assume everything is moving along.



Karl cut a piece of wood so she could be mroe comfortable. Then we got a cushion from Walmart. See how far out that board goes from the actual chair?



Isn't this ridiculous? If I thought I could complain to someone, I would. Each place takes a long time to do their part. The wheelchair place, then the insurance company, then the place that provides the seat. In the beginning, it was the wheelchair place that really caused the long wait. If Amber didn't have that board and cushion, she would be falling out of that chair.

Enjoy the snow!

Saturday, December 20, 2008 10:29 AM EST

Amber did STUPENDOUS WONDERFUL FANTASTIC!!! She got four teeth pulled instead of six.

Yesterday morning we had terrible weather so we left one hour early to get to the hospital. It was sleeting out and the lift wouldn't work in our van! So Amber just rode in the seat and we took her foldable wheelchair.

The surgery was at 9am. We were with her in recovery about 11am. And we were home about 1pm.



Amber with all her teeth.


Amber getting ready for surgery.



Amber enjoyed all the attention. I told her over and over that they were pulling her teeth out and it would hurt. I never want any surprises for her. I want her to know exactly what is going on.



Amber right after surgery. She was miserable. She never cried! She just moaned and whimpered a little. Also, she wouldn't hold still and kept trying to sit up.



We debated on whether to put headphones on her with classical music. We figured it would be uncomfortable and she was moving around so much. The MOMENT we put the headphones on she was INSTANTLY calmed down. It was totally amazing. The nurse couldn't believe it. She had never seen anything like it. Amber immediately went to sleep and soon after we were able to go home.



This is Dr. Whittaker checking on her right before he left the hospital. He was wonderful and so caring. He even called us later in the afternoon to see how Amber was doing. This guy is the best! I have his cell phone # and he said to call if we have any problems.



Amber starting to smile after we got home. She was prescribed Tylenol with Codeine, but we have given her NO PAIN MEDICINE! She is doing fabulous! She is back to her old self already!



Is this amazing or what! We feel so blessed to live in a country where once again Amber's life has been saved.



Amber will continue to be on antibiotics and now the infection can really go away. The infection was across her entire upper teeth/gum line. It was bad. She has seven stitches that will dissolve.



The dentist said he will make no predictions. He will continue to see her often and we will watch how her adult teeth come in. He said he can't determine how we are going to handle this and we will take one day at a time. Amber is continuing to grind away and it looks like her bottom teeth are actually digging into her gums on top now. But she keeps on grinding! It looks so painful, but Amber is one tough cookie!



Amber enjoying her music. She loves it and sometimes giggles while she is listening. Bach, Beethoven and Mozart. She loves them all.



Here are the four teeth that were pulled.


Thank you for your prayers and your concern. I couldn't have asked for this to go any better. I am so proud of Amber and love her even more than ever, if that were even possible.

Wednesday, December 17, 2008 8:17 PM EST

Just a quick update. Amber is doing well. We are keeping the antibiotics in her. She has been having some breathing episodes at school. Next time I post I will be telling you about her six teeth getting pulled. Only two more days!

Will write more soon!

UPDATE Thursday, December 18, 2008 9:49 AM

They have moved Amber's surgery to 9:30am. We have to be at the hospital by 8am. They said the surgery will take about 1-1 1/2 hours. OUCH!

Wednesday, December 10, 2008 8:26 PM EST

Last Thursday we went to the hospital to have Amber's blood drawn, an EKG and a meeting with the anesthesiologist. We were there four hours!! They poked Amber FIVE times and still got barely enough blood. They even called the supervisor (he was unavailable) and then some woman from another part of the hospital. Even she was unable to do very well. Amber was a real trooper. She never cried until the fifth time and then she was just plain old pissed off. She did great. Fifteen minutes after we got home we received a call that the blood was no good. It had clotted or something like that.

First we got the EKG. The woman couldn't have been nicer and we had such a nice conversation. When she left us, she told me she would pray for us. I just felt God's presence at that moment. Then we met with a Physician's Assistant. He burst into the room and told me he had a handicap daughter and only he and I know what it is really like to deal with these children. He talked a mile a minute and I loved him. He was full of energy and I am quite certain he probably gets on his co-workers nerves, but he was great with us. He spoke about the Lord and it gave me peace to have two people bring up God while we were at the hospital. And then we did the blood work, which took the majority of our time and was a nightmare. At one point the physician's assistant came in the lab and did a double-take. He couldn't believe we were still there and he was hot. He came back with a Kroger gift card for me. Everyone just looked as he barged out of the room and I was all smiles. After the never-ending blood drawing ordeal, we went to see the anesthesiologist. That went well. He understood Amber's breath holding episodes. The only thing is, he isn't necessarily the doctor that will be there, but he made notes. So hopefully all will go well. I am able to give Amber Pedia Sure eight hours before surgery so I will be feeding her at 5am that morning since the surgery is at 1pm.

When we left the hospital they brought me the wrong van. I had done the valet parking which was really really convenient and free! It was just one thing after another that day.

So I took Amber back Monday to have her blood drawn again. This time the supervisor did it and Amber was all smiles since he was good looking. Then we waited for about 15 minutes to make sure the blood was good and it wasn't! So back in the room we went and they drew more. I told them not to call me if the blood was no good. Ha! Also, they gave me two more gift cards to Krogers.

Amber's infection is still hanging on. If I miss even one dose, her lip and/or face appears to be just a little bit swollen. Those teeth need to get out soon!

School has said Amber has been out of it for the last couple days. I think the infection is taking its toll on her. I have a feeling Amber isn't feeling 100but life is still manageable.

I am sure I am forgetting something, but that's all I can think of for now.

Wednesday, December 3, 2008 9:20 PM EST

Amber was fine Saturday morning and so was Tori. They must have had the 24 hour flu. Amber never did throw up thank goodness.

Amber has been on antibiotics for a couple weeks now. She is supposed to take it four times a day. Ok. So I slacked off a little bit and I think there were a few scattered days where she only got two or three doses. Well, Monday evening Amber fell asleep at 5pm & at 7am the next morning, she still didn't want to wake up! And then I almost thought her lip was looking swollen, but that couldn't be after being on antibiotics all this time, right? So I kept her home Tuesday and when I called school to tell them she wouldn't be in, the teacher said they also thought she looked a little swollen the day before. So I'm not losing it! Well, you can bet she isn't missing any more doses! She is all better now, but I still think her gums don't look quite right. It's like the infection is just waiting to pop out again. So now I see how urgent it is that we get these teeth out so she can quit grinding them and start really healing.

I was able to speak with the Texas nurse, Judy, yesterday. I just wanted to know if there is anything we need to know for this procedure. Amber is getting pre-op testing done tomorrow. Also, I am meeting with the anesthesologist. Judy said it is important the anesthesiologist understands that when Amber wakes up from the procedure, it is highly likely that she will be stressed, which then makes her breath hold. He needs to understand this is ok. Oh this should be a wonderful conversation. Trying to convince another doctor that it is ok for Amber to quit breathing. She emphasized it is not ok for Amber to quit breathing while under anesthesia, but the moment she wakes up, it IS ok. This totally makes sense to me. Judy gave me the phone number for their anesthesiologist and if ours has any questions, he should call her. Amber also has to get an EKG (heart) tomorrow.

Amber went to the doctor on Monday for a check up and everything was fine. (Not knowing that by the evening Amber was going to start feeling sick!) The doctor said the dentist was so concerned about Amber that he called her personally and they talked. I love our dentist!

Friday, November 28, 2008 5:59 PM CST

Here are some pics of Amber when her face was swollen.





We had a very nice Thanksgiving. We traveled to Cincinnati. Amber was all smiles the whole way. She slept the whole way back in the evening. I now realize she was getting sick yesterday afternoon.

She woke up this morning and was very white and not smiling. It is difficult to determine whether to give her Pedia Sure through her tube when she isn't feeling well. I gave her some today, but not as much as usual. I tried feeding her homemade chicken noodle soup, but she wouldn't eat it. This evening she had two breath holding episodes and I swear she almost passed out both times. They were the worst we have ever seen. Now she really appears to be sick. She is very white and VERY shaky. Much more than usual. Tori is very sick also. She is throwing up. So far Amber hasn't thrown up.

Monday Amber has a doctor appointment. The dentist is requesting the doctor look her over before the surgery. She is now on her second round of antibiotics. Her teeth and gums look much better. Her teeth pulling is scheduled for 1pm on December 19. I try not to think about the whole thing. It just doesn't seem right, but I know it is best for her.

Hope you all had a nice Thanksgiving.

Monday, November 24, 2008 7:38 PM EST

Amber is doing well. She still has some swelling, but she is happy and back to her old self. She went to school today. Her teeth pulling date is set for 12/19. It couldn't be a worse day for me. I am covering for a girl at work that week, we have a meeting on that day in which I have to get ready for and the next day we are celebrating Christmas with out of town family. Everything will be fine. It just adds a little more stress into the mix. I work for a great place and they totally understand me not being there.

Really, there is nothing else going on. Amber has been sleeping alot. I am still a little concerned that the infection appears to be going away slowly. I guess I'm always used to a quick fix and this seems to be taking awhile. I totally see why the dentist is keeping her on antibiotics for a month.

It really freaks me out thinking about them pulling six of Amber's teeth. That just doesn't seem....natural. Not sure if that is the right word for it, but I just can't imagine what she is going to be like afterwards. It is supposed to be out patient, but I figure we will have to spend the night. Just a hunch.

Thank you everyone for your concern. I appreciate it.

Wednesday, November 19, 2008 8:30 PM EST

Amber's left side of her face is very swollen. Her lip up to her cheek bone is swollen. I kept her home from school today. I noticed it first when she got home yesterday. I can't figure out what it is. I think it is either a sinus infection or something to do with her teeth. I am going to call the dentist tomorrow. She even woke up last night during the night whining. That is so unusual for her. I laid with her for a few minutes and she went right back to sleep. Her face looks so painful. She isn't really unhappy, but she certainly isn't herself. She isn't laughing and giggling like usual.

Will keep you posted.

UPDATE 12:20pm November 20

Amber's teeth and gums are infected!! They are infected from her grinding her teeth down to nothing. Our dentist is wonderful!! He prescribed antibiotics and took x-rays. She will have SIX, yes SIX, teeth pulled in December. They are all baby teeth and need to be pulled so this doesn't happen again. Ouch! This will be done in a hospital and so far the date is set for December 19. We have to keep a close eye on her and make sure it doesn't get worse. He stressed this is very serious and to take her to the ER if her face starts bruising up in her sinuses. I am so glad we have figured this out and are now taking care of it. Amber will be home from school at least another day.

Thanks for stopping by!

Friday, November 8, 2008 10:45 PM EST

Well, life is back to normal. If you can call our life normal. I went to school once this week to drop off some papers. Also, I gave the teacher a Rett Syndrome Handbook.

Amber is doing fabulous. She has had THREE, yes THREE, days of no breath holding at school. Amazing, isn't it? Makes you wonder why. I'll just let you come up with your own conclusion on that one.

Yesterday Amber pooped in the toilet at school. They said she had her best day EVER. That's what it said in her notebook. Amber really does seem to be more and more alert. I know I say that here and there, but it does seem like she is improving. It will be so exciting when she gets her communication device. I really believe Amber has the ability to communicate much more. Sometimes she tries so hard to speak to me and it breaks my heart. How frustrating that must be!

Thank you for your guestbook entries. I am still amazed at who is still reading Amber's journal.

I am happy to say there is nothing else going on here. It's about time!

Thursday, October 30, 2008 8:35 PM EST

Yesterday was our meeting with Amber's school. It went well. I think everyone understands Amber a little better. Some changes that have been made:

"The team agreed that no physical prompting to the head will occur to bring Amber back to task-other strategies will be employed; eye gaze will also be utilized as a primary means of commmunication."

Also, "activites that may promote or result in overload to Amber's system, resulting in observable stress, should be stopped for a period of time to allow Amber needed down time".

Also, the bus aide is going to have a cell phone purchased by the school specifically for Amber. This will be used in the event of an emergency. We came to an agreement that 911 would be called after a few criteria have been met. I am totally ok with that and always have been. I just provided them with the information they needed and it was never ok, so they had to come up with their own plan, and they did. It was approved by Judy and me.

We also came up with a plan for when it is hot out. It basically says when we start feeling damp from the heat, it is too hot for Amber. There is also criteria that will be met for that too. I'm not really ok with anything but air conditioning so on hot days I plan on just keeping her home from school, so I'm not too concerned about what they have planned.

The nurse and I certainly didn't agree on most everything. Despite the fact that I have documentation from THE top doctor in the world on Rett Syndrome, she made comments that were just wrong. She asked when we stopped the seizure medications and wonders if there is a correlation between that and the breath holding spells. She said she HAD to contact Amber's doctor to advise what she witnessed. She said Amber was completely unconscious (I highly doubt it.) I reminded her that she never bothered to contact me first to ask for permission or just out of courtesy to let me know she was calling. (Why? Because she knew I would say no.) I also mentioned that contacting my child's doctor without permission is against the law. We never did come to any sort of agreement. I also asked her if she ever bothered to take ten minutes and search the internet to possibly educate herself on Amber and/or Rett Syndrome before jumping to conclusions about what was going on. Bottom line--the nurse obviously thinks Amber is still having seizures and that the breath holding isn't ok. I am under the impression she thinks we somehow need to "fix" these breath holding spells. (Breath holding does not hurt Amber AT ALL and is completely normal for Amber.) Numerous times she wanted to know what our "Toledo doctor" says about all this. Maybe she thinks Dr. Glaze is some quack and I need a second opinion. Who knows. I think she can't stand that she is wrong in this. Plain and simple. I just hope I don't ever have to deal with her again.

Amber didn't go to school today. She has a terrible cold. She slept the entire day. I am going to keep her home tomorrow also. So she has actually missed two weeks of school!

Some more things I learned during our Chicago visit:

1) I learned a little more about Amber's g-tube and what to look for when she needs to get to the next size.
2) She has lost some weight, so we will increase her Pedia Sure intake.
3) I was again told there is no need for a Dexa scan for her bones. The scans are inaccurate because you must hold completely still and girls with RS do not hold still! Also, the scans are designed for adults. And most importantly, we wouldn't do anything different than we are doing now.
4) Her teeth grinding should improve as she gets her adult teeth in. Their experience is that most girls grow out of it.
5) If she needs dental work done, she needs to go under anesthesia in a hospital. (Which Amber's dentist already told me he would do so I was happy to hear he is on the right track.)
6) Amber needs to get an EKG SOON! This will make sure she doesn't have a heart problem that is common in girls with RS. She had one done years ago and she is way overdue. It is called Long QT. If she has it, she will have to take a drug on a regular basis. It is totally treatable.
7) She needs to get her Vitamin D checked and also start a Vitamin D supplement.

I make this list as much for myself as to tell you. I will be making an appointment to see our neurologist here in Toledo to see if we can go off the last seizure med. I am so thankful for the Texas doctors. I have complete confidence in them. I like that they see so many girls with RS from very young to very old, so they have seen it all.

Thank you for everyone's support and I love when you sign the guestbook!


The top Rett doctors in the world.

Sunday, October 26, 2008 7:25 PM EST

The Chicago trip went well. Amber did fantastic. She was extremely happy the entire time. We left at 6:18 am out of Toledo on Friday and almost missed the train! I called the automated system and it said the train was running a half hour late so we didn't arrive there until about 6:10. We thought it was going to leave at 6:45 am. I actually had to run out and tell them to hold the train (per the ticket lady's instructions) as they were ready to leave. She then gave us our tickets and we literally ran to our train car. I think I was shaking for a half hour after we left the station. Talk about a close call. The train started moving before we were even in our seats!

We had a great visit. Amber had stopped breathing while we were in the big conference room where everyone eats breakfast and waits for their appointments. So I wheeled Amber over to Judy (the Texas nurse) and all the doctors while they were eating breakfast so they could see.

Amber needs to get a test to see how much Vitamin D she has in her. Also, they would like her to start taking a Vitamin D supplement. Amber has lost some weight so they want to increase her Pedia Sure intake also.

Judy has been in contact with our Supervisor of special needs for the county. I think everyone understands Amber a little better now, but I am still quite fearful of what my Wednesday meeting is going to bring. I will have another mom and Karl with me. We will be revising Amber's IEP. I know there will be a couple outlines done this week that will be approved by Dr. Glaze in Texas. It will be a plan for the breath holding AND a plan for the heat. Yes, the heat problem that I am always worried about. As Judy put it, we are not really concerned about the breath holding, but we are concerned about Amber and the heat during the warmer months. Amber can get heat stroke. I have been saying this all along, but for some reason, what I say seems to be taken very lightly. Amber will continue to stay home until everything is ok with me.

Also, Judy has told me she doesn't think there will be a problem with the re-directing of Amber's head. She feels certain the supervisor understands that this should not be done to Amber.

On the way home from Chicago, we got on the train and there was complete chaos. Lots of people trying to find seats. We were in the handicap car. Amber had a spot for her wheelchair. Then there were two seats right with that spot. A woman was sitting in one of those seats. There were a total of 14 seats in the car, with about four seats not taken. There are no reserved seats on a train. Only that we had seats in the handicap car. I asked the woman if that was her seat on her ticket as we had a ticket that said "wheelchair" and naturally would need to sit next to that seat. She went off on me. I was in shock. She said "I KNOW you want my seat". And then she just looked straight ahead and wouldn't budge. So I told her the wheelchair had to go there and did she want me to sit in the back away from my children?? She grabbed her stuff and went to another seat. I sat down in her seat and Hayley sat next to me. Talk about uncomfortable. I wanted to crawl under a rock. Not one person said a word in my defense. I was beyond scared. This woman went on and on for about 45 minutes on how somebody needed a butt whooping and she was calling me names. Now you can all say I should have done this and done that, but I weighed my options carefully. I was so ready to go off on this woman, but she obviously was riding with a group and we were the lone ones down there. I was scared to death. I came very close to asking her what her problem was and telling her to shut up and then I decided I didn't know what this woman was capable of so I kept my mouth shut. I did alot of praying and the Lord softened my heart and helped me calm down. Yes, I could have complained, but what was that going to do for me. The conductors definitely seem to have a don't care attitude and what if I complained and nothing was done? The train was packed and there was nowhere else to go. So I could have complained and then sat there listening to her go on some more and who knows what she would have done. There are no baggage checks on a train. Know what I mean? I had two kids to take care of and I had to think about them. I just wanted to get home safely. It was a very stressful 4 1/2 hour ride and I was in fear the whole time. It was bad.

I called Amtrak today and the woman was very kind and told me most of the time people are accomodating. She said this woman obviously had some mental problems and she was real sorry for our experience. I don't know if I handled the situation correctly, but I did what I thought was right at the time. I was fearful that I would complain about her and then everything would have escalated. There was no where else for me to go because 1) the train was packed and 2) I had a kid in a wheelchair.

So it is absolutely wonderful to be home and I don't know if I will be riding a train again.

So now it is the end of a very stressful week and now I am ready to take on the next one....I think.

Wednesday, October 22, 2008 8:42 PM EST

I have finally calmed down and now feel some peace, even though I am in the midst of a storm.

These people need to be educated on Amber. Today the supervisor for special needs for the county called me. She is very nice. I think we had a productive conversation. I voiced my concerns. I read to her some parts out of the Rett Syndrome handbook. I told her I absolutely will not tolerate a hand being put on Amber's neck to re-direct her and she won't be going back to school until I can be sure that won't happen. I have also been in contact with a mother here in Toledo who has an adult daughter with RS. She is going with me to my meeting next week. She is very involved in the disability world and will be a great help to me. I also have calls in to numerous other people. It just takes time.

Judy (our nurse from Texas) has put calls into everyone..the principal, the nurse, the supervisor...and has my permission to discuss Amber. I am sure they will get quite an education from her! I will find out the details of her conversations in Chicago.

I am trying not to get too discouraged. Sometimes I allow myself to look at all the wrong being done to Amber... She has completely grown out of her wheelchair and we still have a long time before we get the new seat..... I tried to pick up a prescription last week and they were in capsule form instead of the correct form so it could go in her g-tube.... I tried to take Amber to PPC today and they can't take her because the pediatrician hasn't filled out the paperwork that has been faxed to her numerous times. I call the pediatrician and they say they have never received any documents. So now I will follow-up tomorrow to make sure everyone is doing their job..... When I went to school on Monday, I thought I would try to park in the handicap spot (I was in a mood!) since I had the van with the lift. There wasn't room for the lift to come out and there were dumpsters in the way. I have voiced my concern about this one handicap spot for the entire school and then I let it drop... I am so sick of everyone right now!

I am still asking about why the nurse called the doctor's office without my knowledge. I am waiting for someone to own up that she was wrong. I have heard far too many excuses.

Then I get told the letter from the Texas doctor was a generalized letter that referred to girls with Rett Syndrome and not Amber specifically. NOT TRUE. It did refer to Amber specifically. Where do these people come up with all this stuff?

Amber has had very little breath holding episodes since she has been home. Stress is obviously contributing to her breath holding.

I am still trying to figure out what wheelchair I am taking to Chicago. I wanted to take her too small one because it is easier to push. We are trying to rig up her seat to make it more comfortable. If that doesn't work, I will have to use the foldable wheelchair that is more like a stroller.

On Sunday the pastor preached about praising God in all circumstances. I just know God knew what kind of week I was going to have. I am praising him during this mess. There will be alot of good that comes out of this. I have faith.

OK I'm done. Thanks for listening. By the way, Amber is extremely happy.

UPDATE: 10/23/08

Things are starting to move along. Judy is continuing to help me and making phone calls and educating people. I think and hope that Amber's disability is being understood. We are off to Chicago tomorrow!

Monday, October 20, 2008 6:07 PM EST

I went to school today. Amber rode the bus and no one knew I was coming in. The entire visit was AWFUL. I went into her room and the aide had her hand on Amber's neck and they were doing "writing time". I very nicely told the teacher I didn't want anyone putting their hand on her neck and re-directing her. The teacher said she does this with all the students. I said Amber is not like all the other students. We exchanged words back and forth and never came to an agreement. She said sometimes Amber is stubborn and doesn't like to do certain things at school and won't pay attention and looks away. I told her Amber needs to look away and collect her thoughts before she can perform a task.

I then told her I didn't think the excercising was good and that Amber was getting stressed. She again said sometimes Amber laughs and is fine with it. I said and sometimes she is not. It really didn't go well. I left and walked down to the principal.

I gave the principal the letter from the Texas Rett doctor. She read it and then asked if the doctor was aware of how many times Amber is breath holding. I said how do you think I got the letter. She said they need to have some protocol for the seizures. I said there are no seizures. She said then why is Amber on seizure medicine. I said because the doctor is keeping her on a very low dose as a precautionary measure as she has the potential for seizures. I also stated the report signed by the doctor states Amber is not having seizures. Then I asked why the nurse called our doctor behind our back and the principal said she didn't know why. I reminded her it was against the law and should not be done again. It really didn't go well at all. I have provided the documentation they want and they don't like it. I am at a loss as to what they want now.

I left the school and cried the rest of the morning. I called the Texas doctor and wonderful Judy helped me feel sane again. She has put a call into Kathy Hunter (founder of the Rett Syndrome Assocation) and the new director of the association. Also, she gave me instructions on who to contact and what I am to do. I went back to school and got Amber and she will be home until we get things settled.

I never dreamed it was going to come to this. I told Judy I didn't want to make trouble and she said the school has brought this on themselves and we need to move forward with this. So I have made numerous phone calls and I am going to have people with me at our next meeting which is scheduled for Wednesday. The principal called and wanted us to meet with the nurse tomorrow. I said no and so we set it up for 10/29. I need to get help as I am just a mom and they obviously don't take me seriously, even with letters and forms from doctors. This should be fun talking to a school nurse who obviously thinks she knows a thing or two. I get the impression they think I am hiding things and misleading the doctors to get them to say what I want. Makes no sense to me. They believe she is having seizures and they believe it is not normal for her to quit breathing. They also think it is ok to move Amber's head by putting pressure on her neck. If someone, anyone, at that school had even tried to educate themselves on Rett Syndrome they might understand her more. From the RS Handbook page 320:

"Girls with RS do not always concentrate in a typical way. They may look away and seem detached, or they may seem distracted or as if they are not paying attention."

And this is what I tried to tell the teacher. Amber can take up to TWO MINUTES to respond. Instead, they find it necessary to turn her head to look at a page when she doesn't move quick enough. Poor Amber is trying to concentrate by looking away. I am mad just thinking about her going through this for so long and I had no idea. Judy couldn't believe they are even trying to make Amber write anything as it is not physically possible for Amber to do so EVER. She is lucky if she can hold on to a pencil for 3 seconds.

Who knows what Amber is being made to do that I don't know about.

Thanks for keeping up with us. I think I am in for a crazy long adventure on this one. Going to Chicago is in God's perfect timing. I need to see these doctors in the worst way.

Thursday, October 16, 2008 10:02 PM EST

What a day! Mariah and I went to school today and watched Amber in the musical. Amber stood up there the whole time while her aide held on to her from behind. She was all smiles. Then we went into her classroom and watched her during her writing time. I have to say there were so many things I saw that I didn't like. Well, I have decided I need to address some things and this won't be easy. I don't like conflict! For one thing, the aide puts her hand on Amber's neck and directs Amber's head that way. So if Amber looks away, the aide "forces" her to look at the paper. I could tell Amber totally didn't like it. You should have seen how she would look at the aide (when she could, because the aide would immediately make her look back at the paper). What the aide doesn't realize is that Amber has Apraxia and this is how she collects her thoughts. She must look away in concentration, and then she is able to focus on what she needs to do. This can take her up to a minute. I even told the aide that Amber didn't like it. The aide's response was "none of the kids like writing".

Next...The kids did some exercise, like reach for the sky, then touch your toes. Well, Amber was made to do this and was quite flustered! Her face was all red and making her reach up and then bend down is just plain old hard on her! The bending over part is what really bothers me. This was all done very fast too.

So I have some things I need to address next week. Amber's teacher won't be at school tomorrow so I am keeping Amber home. I have had enough stress for one week and I just want her to be home safe and sound. I don't know who the substitute will be and I don't want to worry about her all day.

I talked with the principal while we were eating in the cafteria. It was a nice conversation. She said they are all very worried about Amber and need to know what to do during these breathing situations. I said I will have a letter from the doctor very soon. I also said I didn't like that the nurse called our neurologist without my knowledge. The principal's answer was that they were just so worried. OK. I have to address that one also. What that nurse did was illegal and it better not happen again. The nurse was not in today or I would have talked to her.

I had a lengthy (one hour!) conversation today with Judy, our Texas doctor's nurse. She has already sent me a letter addressing Amber's breathing issues. I will post it here as soon as I get it. She read it to me and it is FABULOUS. I feel so much more confident having these knowledgeable doctors steering me in the right direction. If it weren't for Judy, I would be totally lost. She gives me such confidence. I told her the school wants to know when to call 911. Judy says never. Never? She says that's right. If Amber were to ever pass out, she will immediately start breathing normally, just as she does when she is sleeping. How simple is this? I said, has any Rett girls ever died from this whole breathing thing? And she again said never. How reassuring. Then I asked her what to do about the aide and she put it very simply. She said I need to ask the aide if she would like it if someone forced her to look where they wanted her to look by placing their hand on her neck. I hope I don't have trouble with all this. I need Amber to be treated with a little more respect. Just because she can't voice her opinion doesn't mean she doesn't have one!

Amber has heard me talking today and I have actually given the aide a nickname. I call the aide something and Amber gets hysterical. I even told her I was going to pop the aide in the nose if she ever puts her hand on Amber's neck again and Amber laughs!

Amber has been beyond happy tonight. She has been watching Dora the Explorer with her sisters and they are all singing. I feel very protective of her right now and she is getting lots of kisses today!

Sorry this was so long people, but we have lots going on here. My mind is mush.

Oh! One more thing. I went to the conference last night for Project DOCC and it was terrible! I was falling asleep. It was B-O-R-I-N-G. We had to fill out an evaulation and I noticed the guy in front of me wrote that he hadn't learned anything. That's exactly how I felt. The woman who spoke was very knowledgeable and came from New York. I just didn't get what her whole point was. At least I got paid for going. That's the only thing that kept me there!

We go to Chicago in one week and I can't wait to see Judy. She has helped me keep my sanity this week and I deeply appreciate it.

I really do hope to post some pictures some day....

Tuesday, October 14, 2008 9:28 PM EST

Amber is having some serious breath holding spells. I got a call Monday and today regarding this. I really don't know what to tell them. I am quite frustrated with the whole situation. This is normal Rett behavior, but I get the feeling everyone thinks I am a deadbeat.

Today I got a call from the teacher that Amber had yet another "episode". I told her I would call the Rett doctor in Texas, not the neurologist in Toledo. She asked me what the Toledo doctor's name is and I told her. About 15 minutes later I get a call from the Toledo doctor's nurse asking if it is ok to talk to the school nurse. WHAT? I said no. Obviously Amber's teacher told the school nurse the doctor's name. I feel like she went behind my back. (the school nurse) With all the privacy laws, why on earth would she think it was ok to call Amber's doctor without first consulting with me?? I have never talked to this woman! In the meantime, I was able to talk with the nurse in Texas and she is sending me a letter stating breath holding is normal Rett behavior. I know this rattles everyone and freaks people out, but what does everyone want me to do? Seriously, if they have some brilliant idea, I would like to hear it. If they think they know more than the specialists and me, then bring it on.

I am frustrated right now and I guess it shows! On the bright side, Amber is still as happy as can be. I do believe something is going on with her, but I can't quite figure it out yet. Between the breathing episodes, and she looks a little white and she is having some poo issues going on, I may have her checked for a UTI. Other than that, I don't know what to do. Thank goodness the doctors and I at least agree on everything. Amber quits breathing and this is life for us.

I understand the school needs to be careful and protect themselves, but I don't feel like this is being handled properly.

I may keep Amber home from school tomorrow so I can get a break from the mental stress of this all. At least she can just chill out with us.

Thursday I will be having lunch at school with Amber for a Parent/Student luncheon. What a perfect time to talk with everyone.

Are you people still out there or is Linda the only one that signs the guestbook anymore?

October is Rett Syndrome Awareness Month!

Sunday, October 12, 2008 10:33 PM EST

We finally got Amber's wheelchair situation taken care of. The wheelchair adjustments have been approved. They now needed to finalize everything. We ordered a new seat. I am not sure what else is being done since they came to our house and I wasn't here. Karl took care of everything and you know how men communicate all the details! I did have to run over to the wheelchair place the next day since no one (the kids and Karl) wanted to pick out a color for the seat. I have to admit it was quite difficult. I had about one hundred different colors and designs to choose from. I ended up going with a gray seat. I was going to get crazy and order a pink one, but I chickened out.

Amber had some poo issues this weekend, but somehow stayed happy through it all.

I will be attending a workshop for Autism Spectrum Disorders this Wednesday evening. I get the workshop paid for AND I get paid to go! Project DOCC (Delivery of Chronic Care) is encouraging us parents to go.

Then next week I will be attending a focus meeting for Project DOCC at the Toledo Zoo. I will also get paid for that.

I need to get Amber to PPC. If she doesn't go, we will lose our ability to go and have to re-apply. Amber does not have school next Monday so I will shoot for her going then. Amber should go at least every month, which is hard to do since she attends school.

We took a family photo last weekend and also individual pictures. Amber took some great ones, which is a good thing because her school picture is horrible. I think she had one of her breathing spells right before it and she had a bad hair day. I know I am really behind in the picture department so I will try to post some soon.

I am planning on getting Amber's hair cut short. I think it is now long enough for Locks of Love. No one wants it cut short, but they don't have to deal with it...I DO! She'll be pretty no matter how short her hair is.

Good judgment comes from experience. Experience comes from bad judgment. -Mark Twain

Saturday, October 4, 2008 8:51 AM EST

Amber is continuing to do well. She is so happy and full of personality. She just called out "Muh" and was looking at me as I type. I had to go over and give her a kiss. She is eating full lunches at school. They don't even feed her through her tube. We feed her breakfast each morning and she eats dinner with us also. The tube feeding is more for her fluids than anything else now.

Amber goes on the toilet sometimes at school. I am going to try putting her on at home. The teacher wrote a note home last week that she went on the toilet and all the girls in the bathroom were cheering for her. How cool is that!

Last week I was at Sams Club and we ran into two people that knew Amber. One person came up to us and started talking to her and said she was a teacher at Amber's school. It is amazing when I take Amber out, how many people know her and I haven't a clue who they are.

She is having more episodes lately. Last weekend she stopped breathing like six times. I really don't know what is going on, because then she went a couple days of no problems. I really don't think there is anything to do about this. That will definitely be a question to ask while we are in Chicago.

Earlier this week Amber's upper lip was very swollen. I still don't know the reason, but it is all better now.

I received a letter yesterday from the wheelchair place asking us to call and make an appointment for final measurements "so we can order your equipment". I had just called the physical therapist on Thursday asking what the status is and that is the date of the letter. Hmmmmm. Does that mean my call prompted this? I am hoping the equipment has already been ordered since I have only been waiting since January for this. If not, I am afraid I am going to blow my top. There can't be any confusion here, right? I shall find out Monday....

Monday, September 22, 2008 8:20 PM EST

We have both prescriptions. We even got a call yesterday that the one prescription that needed "prior authorization", but could not be filled under any circumstance, was indeed filled on a Sunday! I made a call to both doctors on Friday because I just knew the pharmacy wouldn't do their part. When I picked up the scripts, the woman who told me "even the doctor can't override this one", was there. I asked her how we were able to get it. She said she didn't know, but the doctor did something. I said I thought even the doctor couldn't do this (per her words). She said she didn't know how he did it. What happened is she gave me erroneous information.

I find it amazing these people deal with insurance companies and doctors every day, and yet she didn't have her facts straight. Even I knew Amber's med needed a special authorization from the doctor. I had never heard of the insurance company not allowing it. This was a first. It is scarey to think that these people are actually putting pills in bottles and are handing them out to people. Also, the so-called partial dose that they didn't fill was 3/4 of a bottle full. We should have had that bottle in our hands last Friday.

I never was able to find Senna on my own, not that I tried real hard. Even though it is over-the-counter, we get liquid Senna and it is not easy to find. No harm done. Amber is still doing great.

Thank you for listening to me babble. It is always good to vent once in awhile, isn't it?

Check out the above video. It is by Sanctus Real. The lead singer grew up in our church and his parents still go there. I love this song. It reminds me of what goes on in our life with Amber and everything else....."it feels like chaos, but somehow there's peace."

Saturday, September 20, 2008 9:13 AM EST

Amber is peeing in the toilet daily at school!

I tried to pick up a couple scripts at Krogers yesterday. What a joke. I called these scripts in earlier in the week. I am still amazed at the incompetence of people. I needed Senna and they said the refill was only partial so they didn't know if I still wanted it so they didn't fill it. I just looked at the lady. Now does that make any sense? So now we are out of Senna. The pharmacy didn't have any in stock (had they even attempted to fill the partial, we would have had it on the day I went in). But instead the pharmacy took it upon themselves to make the decision that I didn't actually want a partial refill and now they are ordering the partial as they didn't have it in stock. During the week it would only take a day to come in, but I went on a Friday so now it won't be in until Monday. They even called other stores and they didn't have any. I am so sick of always getting a hassle when this stuff is common sense!! Of course I want my prescription filled! That is why I called it in!

On to my next gripe. Then I try to get Amber's seizure medicince and they state I need prior authorization but the lady couldn't seem to give me a reason why. I later found out after I called the pharmacy later in the day to get all my facts straight that insurance has completely and totally denied Amber's seizure medicine. Even the doctor can't over-ride this one. They do state she can have generic. Of course, maybe had the pharmacy told me this while I was standing in front of them, I could have taken the generic, but because I wasn't informed, I have to make another trip back there today. Thank goodness we are no longer relying much on this seizure med. I feel sorry for the doctor's other patients who can no longer get this med because there is a difference between generic and the real thing, especially for seizure meds. I am sure the doctor is frustrated as insurance dictates what he can and can't do.

Amber is doing great, but I am sure her going without her Senna for a couple days is going to mess her up. We are relying on Milk of Magnesia for now. Also, Karl reminded me that Senna is over-the-counter so I can probably go pick it up today anyway! We just get it as a prescription to get it paid for. I forgot it is over-the-counter!

Thanks for listening to my complaining people! Is anyone still out there?

Thursday, September 18, 2008 3:34 PM EST

Amber pooped and peed in the toilet at school today!!!!!!!! Go Amber!

She has so much potential, we just have to believe in her and give her a chance!

She had a very shaky episode today at school and stopped breathing also.

I love this quote:

Recognition of the problem is half the solution. James Farmer (1920-1992) Activist

Wednesday, September 17, 2008 8:09 PM EST

Amber lost a tooth Sunday morning. I have no idea where it went. Maybe in her tummy? It was one of her ones on the bottom right in front. That is the second tooth Amber has lost so far. We never found the first one either.

Amber peed in the toilet! They have been putting her on the toilet at school twice a day. Lately she pees as soon as they take her off the toilet. So her aide got the idea to take her off the toilet and then sit her right back on and she peed! The teacher was so excited that she called me.

Amber is happy again and hasn't been crying at all. Her cold is over. She hasn't been having too many of her episodes either.

Nothing else going on here!

Wednesday, September 10, 2008 6:09 PM EST

Yesterday we went to the Assistive Technology Clinic. Amber did awesome! They put a reflective dot on her forehead and then a communication device was put in front of her. There was a cursor on the page in the shape of a hand. As she moved her head, the cursor moved. The dot was making the cursor move. It was so exciting to see. Amber caught on right away. She found that she was making the choices! They always gave her four choices. She always ended up going back to playing the songs. She had choices like "I want to blow bubbles" or "I want to play with a ball". She could also choose on another screen "Old McDonald had a Farm", "Twinkle Twinkle Little Star" and "Happy Birthday". Amber consistently picked "Happy Birthday". Amber responds to music the best so this was no surprise. The people there were her old therapists and her physical medicine doctor who suggested we go in the first place. So they are ordering her the device after a huge amount of paperwork to be filled out. This will be done by the Speech Therapist who we don't even see anymore! If insurance approves it, we will get one. This device costs $8000.00!!!

This communication device is neat. I can't say enough about it. I will have to go to training for it. Also, we will be able to download Amber's favorite music and pictures. They said it is also like an MP3 player. This whole process should take at least four months.

We didn't even bother with trying out a wheelchair that she can operate with her head. She was tired out after using the communication device. She worked on it for about a half hour. She is not eligible for a new wheelchair for a couple years anyway so we will go another time.

Amber has a cold, but is still happy.

Monday, September 8, 2008 8:32 PM EST

Amber is doing fabulous again. She is alert and happy. She is even walking much better in her AFOs. I started giving her reflux medicine again and it seems to have helped. Possibly she was in pain and the gagging was caused from her reflux. She still has a cough and now she has a runny nose. She is holding on to objects better and just doing great.

Friday I took her to see the doctor for her scoliosis. I waited for him for 2 hours 45 minutes. I kid you not. I told the nurse I was leaving after one hour (that is usually the longest I am willing to wait.) She told me if I re-schedule, it will be the same wait. He comes to Toledo two times per month and always has emergencies and fits everyone in. Blah blah blah. So I stayed. Thank goodness it was just me and my girl because I would have been insane if I had to listen to any of my other kids whine about the wait. Amber was perfectly happy observing everyone in the waiting room and talking to me. I even passed out my only book I had from Project Docc. I called and asked for 50 more. I am going to give them to all our doctors and to people when we are in waiting rooms.

The doctor said there is nothing to do about her spine at this time. It didn't look bad and we are to come back in one year. We saw him for about 8 minutes.

When I took Amber to school after her appointment, her class was on the playground. Everyone came running and was so excited to see her. Amber started laughing and was so happy.

Tomorrow we go to the communication/wheelchair clinic.

Thursday, August 28, 2008 9:46 AM EST

Amber is having a rough couple days. She stayed home from school yesterday. I really don't know what is going on. One minute she is laughing and the next minute she is crying. This morning she was gagging alot. I don't know if she was trying to throw up. She had the fundoplication surgery to help prevent acid reflux and it would make it more difficult for her to throw up. Maybe she is just not feeling well. I sent her to school today with a note to call me if she doesn't do well.

Amber doesn't seem to like her new AFOs. She doesn't walk well in them at all. They look so much more comfortable than the old ones, but she doesn't seem to like them. I may try her old ones on her this week to see if she walks better in them. It's all just a guessing game.

Remember Project DOCC (Delivery of Chronic Care) that I participate in? I have another meeting in September. I think it will be at my house. The resident and another parent will come here and I will show how our home is set up for Amber. Amber will not be here. This is so I can focus on doing my presentation. I have done very few of these with Project DOCC. They seem to have had some problems getting the program up and running. They did mail to me a Community Resource book. It is FABULOUS. When we went for training, all of us parents wrote in a book the different organizations we knew about and that has helped us. It is now in printed form. There are websites, phone numbers and tons of other information. These will be distributed to doctors offices and centers all over the Toledo area. How nice it would have been to go home with this book when Amber was first diagnosed. We didn't know where to turn and that is the situation most parents are in. This book is such an awesome idea. Doctors can now hand this out to parents when they send them home with the earth-shattering news that their child is disabled. If anyone would like one or knows of someone who could use it, please let me know. We want to get this book out to as many people as possible.

Sunday, August 24, 2008 6:37 PM CDT

Amber is continuing to be happy. This is my goal with her. Everything else comes second.

Her PT from school called last week. She just got the message that I had been trying to reach her over the summer. She was very apologetic about the whole wheelchair situation. She had no idea there was a problem. The wheelchair people kept submitting something that wasn't legible. Now I think we got the ball rolling. The Physical Therapist is very determined so I hope things will move along now.

Amber's AFOs are so large that she has to wear larger shoes, which makes it hard for her to do any kind of walking. I bought her a different pair of shoes today. They are a smaller size and a different style. Let's hope they do the trick.

Today we heard a christian comedian at church. He was great. I wasn't in a very good mood this morning and almost didn't go to church. I am so glad I did. He helped me to laugh a little when I didn't feel like laughing. And then he had me crying when he spoke about his daughter. His daughter has cancer. You can visit her website at www.caringbridge.org/visit/kgk

Amber has had a few episodes (seizure like) but seems to be doing better in that area. I never know what triggers it. I often think it is stress related. Something as little as being fed can stress Amber out.

Saturday, August 16, 2008 7:49 AM EST

Amber went to PPC yesterday. (day care) She did great with her favorite nurse. I picked her up and we went shopping with Amber's sisters. Daddy and brother are canoeing this weekend. We found a pair of white tennis shoes at the very first store. They fit over her AFOs and will go with anything. It is not very realistic to get Amber dress or any other kind of shoes because of her AFOs. I figure white goes with anything! I also bought Amber some clothes for school with some of her birthday money. She is going to be looking cute and stylish this year! I am going out today to buy her a few more. Also to get her school supplies. Her first day of school is Monday. Unfortunately, I have to work, so daddy will be getting her off to school. I will remind him to take a picture of her.

Amber is having a few more episodes lately. Yesterday she stopped breathing when I dropped her off at PPC. It worked out great since I was there to explain to everyone that this was normal and she will be ok. They laughed at me as I said "and now she will stop breathing". I guess it sounds funny for me to explain as each thing happens like it is nothing. Just a way of life for us!

We hear Extreme Home Makeover is coming to Toledo. Many of you have asked. I read in the paper that the five finalists for it have already been interviewed and notified, so unfortunately it is not us.

Thanks for continuing to check on Amber.

Wednesday, August 13, 2008 6:57 PM EST

Amber is continuing to have happy days. I don't think she has cried in over two weeks.

She got her new AFOs on Monday. They have some new inserts and padding and they look VERY comfortable. I think she will do so well in them this year. Unfortunately, they are larger and now do not fit into any of her shoes. You would think with all the people in this house, we could find a pair of shoes that would fit her. She will be getting new ones this weekend. Her first day of school is Monday.

Today she went to the dentist. She giggled most of the time. She loved the cleaning and then when the dentist poked around in her mouth. We discussed the grinding of her teeth down to nothing. She is losing some teeth and some of her adult teeth are coming in. He is going to check her again in six months and determine what to do next. He debated on pulling three of her baby teeth so the adult teeth would come in the best way so the teeth wouldn't hit in the front when she grinds. If he does have to pull them, he will have to do it at a hospital. I am hoping we don't go that route.

I booked our train tickets for Chicago today. The date has been changed to October 25 instead of in November. I found out why our doctor wasn't there the last time and may not be there this time. He has diabetes, is on dialysis and is waiting for a transplant. So he has to stay close to home.

Amber is very alert lately and using her hands more than usual. I will be curious to see if her teacher notices an improvement next week. Often times I forget to give Amber her seizure medicine and I notice no change. I would love to get her off it. I hope the Texas doctor will encourage it and then we will see if we can convince our doctor here.

Nothing else going on. I have every intention of showing some pictures, but then I never get around to it. I will try for next time......

Friday, August 8, 2008 8:04 PM EST

Amber had a nice birthday. This morning while she was being changed and fed, Karl and I sung her Happy Birthday. She sat on the front porch for the morning.

This evening we all sang her Happy Birthday. She LOVED it! She was all smiles and then had one of her "episodes". I think we got her a little overloaded with all the excitement. Then she opened her presents. The present from Mariah was the funniest. It was a coat that Grandma Bonnie had given Mariah the night before for HER birthday. Mariah didn't like it much so she decided to pass it on to Amber. What a hoot! She re-gifted all on her own. Sorry Grandma Bonnie!

Amber is continuing to be happy and enjoying her mellow days. School starts soon and she will be a busy bee!

Thursday, August 7, 2008 8:40 AM CDT

Tomorrow is Amber's 7th Birthday!

Amber is doing so well. She is very happy. If she could be like this all the time, we would be doing good.

Amber is trying to feed herself. She seems to be doing better using her hands. It's a small improvement, but noticeable.

Everything went fine at PPC. Amber went there Monday and then the entire day Tuesday. I will take her there at least one day next week. She starts school August 18!!

I spoke with the doctor (nurse) in Texas. They agreed that Amber had no seizures during the hospital stay. I think part of the reason Amber seems to be so alert and doing so well is because she is no longer on so many meds.

Thanks everyone for your guestbook entries. It is so neat to see who is still checking the site! I was surprised to see how many there were, but I know there are more of you out there lurking!

Saturday, August 2, 2008 6:35 PM EST

We didn't keep the mattress in the living room long. We had visitors so I took it out. I still want to figure something out for her downstairs. I might put it back some day.

We never heard from Amber's school physical therapist so the wheelchair adjustment is on hold until school starts. She is definitely too large for her wheelchair and it is ridiculous that we have to go through all this to get something approved.

Amber will be going to PPC on Monday. I needed someone to take care of her for the day so I had to break down and call. I spoke with the director there and told her about my dissatisfaction with the last time. She was very helpful. I also asked for our favorite nurse, Meg, and she will be working that day so I am VERY happy to hear she is able to take care of Amber. I know Amber will be in good hands. We haven't seen Meg in about a year. I can't wait to talk to her, get her phone number and find out what her hours are. I don't want to lose contact with her again. There was some discussion about PPC no longer being one of the provider's for Amber. A call had to be made to our caseworker and then her supervisor so this can be approved by Monday. I had no idea this was going to be a problem. Funny, if we had any contact with Amber's caseworker, maybe this would never happen. We have had zero contact with her since I filed the complaint about the wheelchair ramp back in November. I think she called the week after it was put in (Christmas Eve it was completed). Amber's caseworker stinks. She's nice enough, but nice doesn't really get us anywhere. I guess I have to get in a mood again and make some calls. Then I was asked (by PPC) if I am still in contact with another caseworker through the Board of MRDD. Nope. Don't hear from her either. Really, I am new to this whole handicap stuff. I sure do wish these people would do their job instead of me always having to do the researching and finding out what we are missing out on.

We saw the neurologist and he said during that four day EEG in the hospital, Amber did not have one seizure. All the little episodes I see (shaking, stops breathing, etc.) are not seizures. Wow. He said she does have spikes, which show the potential for seizures. He said it is like trying to light a match. There are sparks, but no fire. He is keeping her on a very low dose of seizure medicine right now. I wanted to go off it completely, but he doesn't want to mess with how well she is doing. We keep playing phone tag with the doctor in Texas. I can't wait to hear what he has to say about the EEG. I faxed the report to him.

Amber is doing fabulous since the last time I posted. She is very happy and doesn't cry anymore. She has been lots of fun lately. One night this week we were eating dinner and I was talking to the kids about their behavior. Amber started breathing real heavy and was trying to say something. So I asked her which of the kids were bad that day. She immediately looked at Jay. It looked like she was trying to point with her head. We all started laughing. Then I asked who else was bad and she looked right at Mariah. She had us in stitches. She was definitely letting me know what was going on. I asked her if I should spank them (she loves to hear someone is going to get spanked) and she started getting really excited.

I love seeing when you sign the guestbook. Not many people do anymore. I think there are lots of you still checking. Could you sign it and let me know? Thanks!

Wednesday, July 16, 2008 11:25 PM EST

Amber got fitted for her AFOs today. OK, I said the physical medicine doctor is my favorite, but our orthotics guy also is. He was so into Amber. I really can't explain it but he obviously has a sense for handicap kids after all these years of working with them. He really got Amber responding to him and she even reached out to him, which he took as her wanting a hug, so he gave her one! Anyway, he raised his eyebrows when he saw the prescription. They are AFOs as high as her ankles, versus going as high as her knees. He had Amber walk in her bare feet and then he decided it just might work! Yippee! He took a mold of her entire legs just in case the ankle ones don't work. We go back next month to get them. That will be an appointment where we go to it, and then have to return over an hour later while he makes adjustments.

Amber is still having some off days. Maybe not crying all day, but having her moments. They are still these very sad pitiful cries. Possibly Amber is just going through something right now. I know I have read that Rett girls can have extreme mood swings and sadness like this, but sometimes it is hard to accept that she is changing in this way. My biggest fear is she is in pain.

We have taken her out in our pool a few times and she LOVES it. She comes alive in the water and it just puts a smile on everyone's face to see her kicking and giggling. When not holding her, we set her in a boat, put water in the boat, and let her float around the pool. In the meantime, the kids are jumping in and making waves and making her laugh. We have terrible mosquitoes right now (even in the day time) so Amber is not able to go in her swing. We have to watch her closely since she can't swat mosquitoes away. Can you imagine?

We put a mattress in our living room this week. It is getting so hard carrying her up the steps and sometimes she takes some long naps. It is so much more comfortable for her to sleep on the mattress and the girls like to lay on it with her while watching tv. Once we get a video monitor, we plan on keeping her downstairs during the night also.

We got moved to September to go to the communication clinic. The doctor will be on vacation in August, and we want her to be there for it.

I haven't heard any word on the back x-ray or from the doctors in Texas regarding Amber's video EEG report. I will have to make more phone calls.

We still don't have the wheelchair adjusted. We finally took her foot rests off because she was banging her ankles on it. I called the wheelchair place because insurance kept denying her adjustment because it was "illegible". They (the wheelchair place) said the form the physical therapist faxed was fuzzy. I had them fax it to me and indeed it cannot be read. Why in the world would they continue to fax something that can't be read???? So now over seven months later we have gotten nowhere. I tried reaching the physical therapist, but she is off for the summer and won't be back until school starts. I left a message with the county and they said they would try to get it to her. I need the original that she faxed. Amber probably won't have her wheelchair adjusted until after Christmas now.....

Anymore I don't really get any kind of results in regards to Amber unless I do the follow up and I push people. I have to be in the right mood to make all these calls and then look out! It is so much work and I just wish some people would do their job more efficiently and.....use some common sense.

Thank you for continuing to visit Amber's site.

Monday, July 7, 2008 8:50 PM EST

We have been crazy busy lately.

First, here are some pics from Amber's hospital stay.



Here she is getting the wires hooked up.



We stayed in a new part of the hospital.



One of the days I spent going through and filing all of Amber's records. It felt so good to get that done. I just had to take a pic of my accomplishment!



A pic during one of Amber's happier times.



Getting the wires taken off.



Time to get out of this place!

I finally got a copy of the EEG report. It shows Amber does not have seizures, BUT has the potential for seizures. I don't know what that means. I sure would like to know what these "episodes" are. The next step is I need to fax the report to the doctors in Texas and see what they say. On 7/21 Amber has an appointment with our neurologist and hopefully we will get some answers.

We saw the physical medicine doctor last week. She prescribed a different type of AFOs at my request. They will just go around Amber's ankles instead of towards her knees. I want to at least try this. Her other ones are so big and bulky. I will show a picture when we get them.

Today Amber got a back x-ray for her scoliosis. We will be meeting with another doctor regarding that, after he sees the x-ray. He will determine at that time if it is urgent we get in or not. I guess there is quite a wait to see him.

Amber is continuing to take the Mangosteen juice. We are on our last bottle and I'm still not sure if the stuff is helping her or not. It does seem like she gets worse with her seizures/episodes when I forget and skip a day.

Amber has had a couple really bad days in the last week. She pretty much cries the entire day. It is a sad, sobbing, type of cry. I give her every medicine and do everything I can for her, but it doesn't seem to help. Then the day after she is fine. It is very frustrating and sad!

Our physical medicine doctor (who, by the way, is my most favorite doctor)has recommended Amber go to a communication clinic. We have an appointment next month. I really don't know much about this clinic, other than they have devices Amber can try out. There are actually devices that can "read" her eyes. She can make choices with her eyes and the computer will read it. This is amazing and I sure do hope we can try something out like this. Obviously, devices like this are EXPENSIVE and insurance won't pay for them. I think they are somewhere around $20,000 or more.

Today we got Amber a seat that I LOVE. She sits in it so well. It can be seen at www.childrite.com. It is just like the bumbo seat for babies.

I will try to update more often. I am sure I have missed something.

Wednesday, June 11, 2008 5:58 PM EST

Yesterday I tried to get Amber's prescription refilled for her seizure med. The pharmacy said there are no refills left and the doctor's office has not refilled it after numerous requests. I was down to just a couple pills, so I needed this done asap.

I called the doctor's office and spoke with the most obnoxious woman. She proceeded to tell me that Amber was to have discontinued that med months ago and that is why the prescription will not be getting refilled. I told her the doctor changed what he was going to do, that she was originally on three seizure meds and now is down to just the one. She talked to me like I was a criminal and was trying to pull one over on them. Her and I went back and forth for about fiftenn minutes!! The conversation was so ridiculous. I told her to just check with the doctor. She said he's in with patients. I told her we were just in the hospital four days and he said to continue the med when we got out. She said he didn't write it in his notes. Then she asks me why didn't he write it in his notes. I say how in the world do I know why he doesn't write something down and that maybe she should be asking him that question. Finally I told her our conversation needs to end because I am baffled as to how I am supposed to handle this situation since simply talking to the doctor would clear everything up.

I then asked to speak with the doctor's nurse, hoping to get somewhere. She said I would have to call back since she was in another area. Baloney! I called back and guess what. The prescription was already refilled. This was a matter of minutes. I believe the mean woman finally spoke with the doctor and obviously found out what was really going on! I then spoke with the office manager to complain about the treatment I got. She was very helpful. I have a feeling they have had complaints about this person before. I told her life is hard enough dealing with a handicap child and I am just trying to get her prescription refilled for seizures. Why in the world would I get such a hassle from the people that are supposed to be helping us. She said she would speak to the mean one (that's my new name for her) AND the doctor. I told her I also would be following up on this when I see the doctor. I still can't believe the conversation I had. That mean woman wouldn't budge!

Thanks for letting me vent!

Tuesday, June 10, 2008 8:17 AM EST

Amber is doing well. She is very happy. We got her back on her seizure medication now. I didn't see any seizures for days and now I they are back. (if they are indeed seizures). I tried making her doctor appt. for a month from now. He is completely booked and the office will call back. I am sure they are checking to see how they can fit us in. The doctor is the one that said to see him in a month so I am sure they will make it work.

The hospital stay was ok until the last two days. It was rough, but that is behind us now!

I haven't given Amber the Mangosteen juice yet. I wanted to start back up one at a time. If I had started the med and the juice at the same time, how would I see any difference?

I haven't taken Amber back to PPC and I don't think I will unless we absolutely need her to go. It is actually more work and gas money to get her there than stay home. She is happy at home. We try to keep her active with various toys, putting her in her walker and best of all her swing that is now outside. She LOVES her swing. It goes very high and she gets kindof scared, but loves it at the same time.

We see her physical medicine doctor this month. She will write the prescription for the AFOs. Then we will go back to the guy that makes the AFOs. Also, I am hoping the phys. med. doctor can tell us a doctor to go to for Amber's scoliosis.

I am going out of town this weekend with my girls. Hayley and Tori are competing in the NATIONAL JBQ competition. Amber is the only one staying home, along with with her dad and brother. I told her she has to keep them in line and she will be the woman of the house while I am gone. She was all smiles when I told her.

Jay is playing baseball. They just lost their first game. It was very disappointing. Hayley, Tori and Mariah went to their first parade already. They twirl baton and love it.

Nothing else is going on. Our pool is opened up. Amber hasn't gone in it yet, but she will very soon. The water is too cold.

My USB port is messed up so I am unable to show pictures from Amber's hospital stay at this time.

Thanks for checking in!

Thursday, May 29, 2008 9:26 AM EST

We are still in the hospital. The doctor just left. We get to go home tomorrow at noon. Amber had more episodes yesterday. None were the super intense ones she can have, but there were some when she stopped breathing. I am still looking for a certain one. It is amazing that she has gone since Monday evening with no seizure meds and not alot is happening. I am wondering more and more if Amber does NOT have seizures. I know she had them at one time in the beginning (about three years ago), but I am not seeing episodes like that anymore.

The doctor said he is gathering valuable information even though I don't see as much as I would like. Her brain waves are being recorded this entire time.

Amber is continuing to be happy. She did wake up at 6:30 am whimpering and wouldn't open her eyes. She was very sad. Maybe it was a bad dream because she is fine now.

The plan was I would go home each evening as soon as Amber fell asleep. I had myself convinced that is what I would do. But I just couldn't do it. It just didn't feel right leaving her. I am amazed at how many kids on this floor are by themselves most of the time. I just don't get it.

UPDATE 6:04 PM

Amber had a really major seizure about 4pm. The kind I was looking for. So it is good that we are still here.

I have to say I am ready to get out of this place. Amber is bored. She does LOTS of whining, sighing and vocalizing. It is ANNOYING. We have been in a room together far too long. She pulled one of the wires off her head and has also pushed the nurses button. I got her books, toys and am doing everything I can to make her happy, but she has had enough. Oh, and she isn't taking any naps at all.

THEN we have a male student nurse that has come in to assess Amber and annoy the heck out of me. He comes in about every 20 minutes and asks me questions. I am putting on my fake smile and trying to be as nice as possible. I finally told our regular nurse to keep him out of our room if at all possible and that I am a little wacko after being here three days.

I have to go. Amber just threw her toy. What a little angel.

UPDATE 10:00 pm

Amber is having a terrible time tonight. She can't keep quiet. She seems to yell every time she exhales. She can't hold still and is rocking and seems out of control. I am assuming it is because she has gone off her meds cold turkey and is having withdrawals. I questioned the doctor about this and he said she will be fine. After all, we're in a hospital. That's not very comforting now! She isn't crying, but seems to go from being uncomfortable to screeching and laughing. Let's put it this way, she is psycho Amber tonight. I really am ready for the madness to end.

Wednesday, May 28, 2008 9:28 AM EST

This is our second day in the hospital. Amber has had no seizures!! We have stopped her mediciation and still no seizures. Also, I stopped giving her the Mangosteen juice. This is very disappointing. The doctor said we could leave early if we got enough readings. Well so much for that. I am afraid to ask him what we are going to do if we have no seizures after three days.

Amber is doing well otherwise. She is very happy and has some toys to play with. Also, she gets to watch tv on a nice flat screen tv. We are in the new wing of the hospital. We have a very nice room. The couch pulled out into a bed for me. I have wireless connection in the room so I am able to get on the Internet and get emails.

Thumbelina, the world's smallest horse was on our floor yesterday. Unfortunately, we weren't able to go to see her. We would have had to go to the playroom and Amber is hooked up to a machine and can't leave the room. I wanted to go, but I was afraid I would miss a seizure. We did get posters of Thumbelina though.

Nothing else going on. We are hoping and praying for some seizures to show up soon.

UPDATE 12:34pm

Amber has had two seizures/episodes. They weren't really big ones, but at least they were something. She is full of happiness today and is laughing alot.

Friday, May 23, 2008 10:29 PM EST

Amber only had one breathing episode today. She is doing great. So happy and alert. She went bowling today with her class. On Wednesday they went to the zoo. Her last day of school is June 2.

Amber's AFO appointment was a waste of time. We now have to go see the physical medicine doctor to get a prescription for new AFOs. Then we go back to have her fitted. They won't do anything without the prescription.

We go in for her EEG on Tuesday.

One day when I had to change Amber's g-tube, I took some pictures.


This is what her g-tube looks like.


This is what it looks like when it comes out. I deflate the balloon by taking out the water that is in it. This balloon is what holds it in place. There is a small tube going through that balloon that allows the fluid to go through into her stomach.



This is what her stomach looks like when the tube is out. We can't leave it out for long at all. Her body will automatically try to close up this "wound".

The tube is above Amber's belly button and to the right. I hope I didn't gross anyone out. I am so used to this, but I realize it is not for those with a weak stomach. Any questions?

Wednesday, May 21, 2008 9:36 PM EST

First I want to say thanks for visiting this site. It shows you care about what is going on with Amber. She is sitting in a comfy chair beside me and I can't help but look over at her periodically and wonder what she is thinking. Just a few minutes ago she was smiling up a storm. If only we could all be so happy. She is so dependent on me and is so patient with me. Can you imagine not being able to scratch where you itch, get a drink when you are thirsty, put chap stick on when your lips are chapped, ask for a blanket when you are cold.....the possibilities are endless. I totally have a life away from Amber and yet she is on my mind every second of every day. I have to get away to survive or I will go mad. She is so happy and yet sometimes I am so sad for her. Who is better off?

The seizures have decreased. She had three today. Sometimes she has none. She will have an EEG on Tuesday and I can't wait. I want to find out what is going on.

I don't really believe in this Mangosteen juice I am giving her and yet I see something different. Time will tell. She is so alert. Like never before. The seizures have changed too. I am continuing to give it to her. I don't think she has cried in over a week.

Thanks friends for visiting this site. I so appreciate it.

Wednesday, May 14, 2008 7:09 PM EST

Amber's seizures are doing much better. Last week it was rough. They were telling me she was having seizures/episodes anywhere from 6-8 times a day. She would stop breathing many of those times. I was a little nervous wondering if I am doing the right thing by not taking her to the hospital. I did call the doctor in Texas, but never got a return call.

Anyway, she is doing so much better. Last Friday we started giving her this juice called Mangosteen. It's supposed to help in many different ways. Grandma Heiss got it for us. I am willing to try anything, especially since it is natural. So Amber has gotten much better and I can't help but wonder if it is because of this juice! I know it sounds crazy. Amber's teacher asked me what we are doing different and I told her about the juice....and she was silent. She positively thinks I am looney now. Yesterday Amber had one episode and today she had two small ones. So she is doing so much better.

That's about all for now. We are still going in for the EEG the day after Memorial Day.

Thursday, May 8, 2008 4:37 PM EST

Every day is different for us. Amber is continuing to be happy. That's the good news. The bad news is she is having these episodes like crazy. I don't know if they are seizures or not. I wrote to the RettNet, my internet support group, about our little episodes that appear to be seizures, but maybe are not. Many moms wrote to me and say they have been battling this for years. One mom said the Rett doctors say they are NOT seizures and their neurologist says they are. I am sticking this out and hoping we can get through the next few weeks with all these episodes. Amber quit breathing numerous times yesterday. Today it has only happened once so far. I want to believe these are not seizures. I am hoping the one seizure medicine we are on will kick in and control these situations whether they are seizures or not. (If I'm not making sense, just go along with me anyway.) I don't know if I'm coming or going with all this. I try to read and ask questions and I am just plain old confused. I received an answer from Kathy Hunter to my email:

The episodes you describe do not have the character of seizures. What
is
being lost is that we do not say these are nothing or not the result of
abnormal brain activity. It is that these do not seem to emanate from
the
cortex which is the origin of seizures, as they are defined. If
Lamictal
works, I would use it. However, if the video-EEG does not capture
abnormal
electrical activity along with a typical event, these do not meet the
definition of a seizure.

We probably do not make it clear that we do not regard these as
abnormal.
They most likely arise from the midbrain or brainstem. Typically, meds
that
control seizures do not work on these.

What is troublesome is that some of these girls end up on multiple
meds.
When one is ineffective, instead of stopping it, a seond or third or
more is
added. This is bad medicine.

Everything that has a twitch is not a seizure. For some physicians, it
is
hard not to reach for the pill bottle rather than look more deeply into
the
problem.

Kathy Hunter
Founder, International Rett Syndrome Association
Author, The Rett Syndrome Handbook I and II

So I never heard from PPC. I had hoped they would call after the whole fiasco from last week. When I unpacked after our weekend in Indiana, I pulled out the unused cans of Pedia Sure from Amber's bag. One of those cans was chicken noodle soup!!!!!!!!!!! So Amber did NOT get the soup, just like I thought.

Thanks so much for signing the guestbook. Your words are encouraging to me people!

Saturday, May 3, 2008 6:58 PM EST

We're going to Wisconsin! In Ft. Wayne, Indiana, our Junior Bible Quiz Team came in 8th place out of 20 teams for the Great Lakes Region today. We are on to Nationals! Hayley was on the team and Tori was a sub. We are excited! These kids are good! They are memorizing bible verses and it is absolutely amazing to watch. They have to be quick!

Karl took Hayley, Tori and Mariah on Thursday. Quizzing began Friday morning. I followed with Amber and rode with some other mothers on Friday.

On Friday I took Amber to PPC at 7am so I could go to work and then get her in time to catch a ride with some other mothers. We haven't been to PPC in quite awhile. It is managed by Anne Grady Center so things are a little different now. There are alot of new people. At 7am there was only one nurse working and kids were getting dropped off. I questioned the nurse as to when another person would be there to help and she said 7:30. In the meantime, a mom I know said she would be staying for awhile. I gave strict instructions that Amber should not cry and if she did I was to get a call. Also, I needed her fed, changed and ready to go by 3:30 as we were traveling out of town. At 10:30 I called & asked how she was doing and they said she was laying down and was fine. I figured she was having a good day and all was well. When I arrived at 3:30, I just knew I couldn't possibly be hearing Amber crying as I turned the handle on the door. There sat Amber in her wheelchair hysterical. I am not talking just a little crying but extremely upset. I started yelling and asking what is going on. No one was trying to calm her. No one was giving her a lick of attention. I took her to a chair and held her, but she wouldn't calm down. I was starting to panic. By now a woman came to tell me that she only cried off and on during the day and it wasn't bad. OK. I won't go into all the details, but let's just say I was a little pissed. I had this funny feeling Amber was hungry. They told me she was fed, but I decided to give her a can of Pedia Sure anyway. She immediately stopped crying as soon as it started getting in her.

Amber never cried again and was fine the rest of the night and today. I walked out of PPC crying. I am still upset every time I think about it. How awful for her to be hungry and no one help her. Well, I could go on and on about this. I can't prove that she wasn't fed, but I was able to check what was coming out of her belly via her g-tube and it didn't look the way it should after just being fed. I do know she is only going to be with people I know and trust there. Honestly, there are only two people that I will be ok with. So Amber may not be going to PPC much.

I absolutely can't stand that I don't REALLY know what happened and I never will.

Amber is completely off two of her seizure medicines. That leaves her with one. She is one happy girl lately. (Except when she is starving. Ha! I had to say that.) She laughs and giggles and is full of happiness. I mean really full of it. I tell her I can see the happiness oozing out everywhere and she gets all giggly. I think those meds really did a number on her. She will be getting an EEG in the hospital the day after Memorial Day. She could be in the hospital up to three days.

Thanks for checking on her.

Wednesday, April 24, 2008 9:19 PM EST

Our Chicago trip was a very worthwhile trip. Unfortunately, Amber did alot of crying. She had the whole constipation thing going on. It all started when we were on the train about one hour away from Chicago. It was a very stressful time since we were on a train with nowhere to go. I ended up calling home and having the girls play some of Amber's favorite music and held the phone to her ear. It helped tremendously. The plan was we were going to take Jay's IPod, but he couldn't get it to work. (His sister got it working while we were gone. It needed a charge. Go figure!) Anyway, when we got off the train, I realized I hadn't packed any Pedia Sure. That's right, we needed to add some more stress into the mix. Thankfully there was a CVS store across from the station. So on to our hotel we went. We called the hotel and the lady told us it was only a half mile from the station. No problem. Nice day. We can walk. Ummmm, it ended up being about two miles. We were EXHAUSTED when we got to the hotel. I literally fell into bed. We all took a 1 1/2 hour nap.

The next morning Amber and I went to our appointment. Our regular doctor wasn't there, but another doc in his office filled in. I was hoping for the doctor from Alabama, but it only makes sense that they put us with the doctor from the same office we have been to. Some of the things that were accomplished during that appointment:

1) Amber needs to have her AFOs looked at.
2) I need to get the written goals for Amber from her OT, PT & Speech therapists. These will be evaluated to make sure they are doing what they are supposed to.
3) The doctor will be providing me with a letter regarding Amber having the need to be in air conditioning. This will be more specific than the last one that was written. This is what the school is requesting.
4) And last but certainly not least, Amber had what I thought was a seizure as we were walking out of the room. They quickly pulled her back in and did all kinds of things like call her name, hold a toy in front of her and move it around. Amber even stopped breathing and even turned blue. Perfect! I was so excited she was doing this in front of the doctor! The doctor said ABSOLUTELY POSITIVELY she was not having a seizure. WHAT??! He showed me how she was fully aware of what was going on and was turning towards her name and following the toy with her eyes. When you are having a seizure you are in a somewhat unconscious state. WOW! So here I am calling the doctor here in Toledo, telling him about all these seizures she is having (which she still could be having them, it's just that the one the doctor saw wasn't one) and loading her up on all this medicine. At least I now know the difference between a seizure and a breathing episode. Sooooo we are now taking her off the new med we just started and I am waiting to hear if he (our doctor in Toledo) will allow us to go off another med. Then Amber will get an EEG the end of May. This is the only way to see her having seizure-like episodes and look at her brain waves at the same time. I am so elated the doctor got to see what I call a seizure. He said we really need to get this taken care of since we have her on so many meds and probably don't need to. No kidding!

When I got home I looked up seizures in the Rett Syndrome Handbook and it states there should not be a concern when Amber stops breathing and turns blue. This is part of Rett Syndrome! Only the RS doctors would know that. They have told me it was normal, but everyone (including other doctors) look at me like I'm nuts. I have always been skeptical, but I'm a believer now!

The other doctor we saw was a GI doctor. Amber has gained 8lbs! She is now supposed to be limited to 2 cans of Pedia Sure a day (down from 3-4). That is if she is eating well by mouth. Also, we are to increase her water intake.

Amber is starting to get scoliosis. We are supposed to find a doctor in Cincinnati to look at her. The concern with scoliosis as she gets older is that it compromises her lungs and her ability to breathe.

The GI doctor also talked to us about Amber's bone density. There is a test that can be done called a Dxa scan (not sure if I spelled that right) and she does not recommend it. She says even if we find something, there is nothing we can do. She says the tests are usually geared towards adults and you must lay absolutely still to get an accurate reading. And we know girls with RS do NOT hold still. She says the only time she recommends it is if the child gets lots of fractures.

One more thing, we are taking Amber off her reflux medicine. We are hoping she is ok with that now.

So it was a wonderful visit other than the crying. Jay was a huge help, especially with directions. Often I would say we should go one way in downtown Chicago and he would say we should go the other way. I learned to listen to him. We were able to do some shopping in between Amber crying and pooping. There was nowhere to change her so that became a real problem also. I got very creative and learned not to care about those around me!

Also, I think I have it all figured out in getting around Chicago. We rode buses and they were very handicap friendly.

We survived!

Thanks for checking on Amber! She is doing well (now that we're home). We arrived in Toledo at 12:15 am Saturday night. The next day Amber slept from 2pm-8pm. She was tired from the trip!

Our next visit to Chicago will be the first weekend in November. Hayley will be going with me this time.

Tuesday, April 15, 2008 8:12 PM EST

Amber's seizures were better yesterday, but today wasn't a good day. I guess she was quite moody at school today. She would whine and then she would get real happy and back and forth like that. I am sure the new med has something to do with it. We will just continue to watch her closely. We are supposed to go down on another med, but we are waiting for insurance to give the okey doke for us to get the smaller dosage of pills, so that hasn't happened yet.

I am looking forward to Chicago. I guess I am looking forward to sitting on a train and reading. And then laying in a hotel room and watching tv. No laundry to do there!

I speak at the conference at Toledo Hospital on Thursday morning. I am nervous, but try not to think about it. Rehearsal went well. I will be glad when it is over and I am so happy I get to read what I have to say.

I really do wish you people would sign the guestbook. Sometimes I wonder if anyone is reading this anymore. Thank you to Amber's few faithful readers that have signed the guestbook. And Amber says thanks too.

MEDICATION UPDATE as of April 12, 2008

125 mg. Depakote 1/day
100 mg. Zonegran 1/day (no change)
75 mg. Topamax 2/day (no change)

Tuesday, April 15, 2008 8:12 PM EST

Amber's seizures were better yesterday, but today wasn't a good day. I guess she was quite moody at school today. She would whine and then she would get real happy and back and forth like that. I am sure the new med has something to do with it. We will just continue to watch her closely. We are supposed to go down on another med, but we are waiting for insurance to give the okey doke for us to get the smaller dosage of pills, so that hasn't happened yet.

I am looking forward to Chicago. I guess I am looking forward to sitting on a train and reading. And then laying in a hotel room and watching tv. No laundry to do there!

I speak at the conference at Toledo Hospital on Thursday morning. I am nervous, but try not to think about it. Rehearsal went well. I will be glad when it is over and I am so happy I get to read what I have to say.

I really do wish you people would sign the guestbook. Sometimes I wonder if anyone is reading this anymore. Thank you to Amber's few faithful readers that have signed the guestbook. And Amber says thanks too.

MEDICATION UPDATE as of April 12, 2008

125 mg. Depakote 1/day
100 mg. Zonegran 1/day (no change)
75 mg. Topamax 2/day (no change)

Friday, April 11, 2008 10:06 PM EST

Amber is having lots of seizures. I spoke with the doctor's office today. We are doing alot of changes in her meds and introducing a completely new one. I will update again with all the specifics (more for my records than anything else.) I kept Amber home from school today. She just isn't herself. I really don't know what is going on. She slept alot today. She is happy most of the time.

We have a college student coming to visit on Sunday. We do this once a year for students at Bowling Green State University.

Thanks to the two people who have signed the guestbook. I know there are more of you out there.

Saturday, April 5, 2008 10:53 PM EST

It has been five years since Amber was diagnosed. I tell strangers about Amber when they ask. I see the sadness in their eyes. I tell my neighbors when they ask how she is doing. I see pity sometimes. Friends and family ask about her. I never get emotional about it. I've had five years to adjust. This is life for us. Some people wonder how we do it. They wonder how we can possibly handle having a handicapped child because they are just certain they could never do what we do. I always tell people I was never given a choice.

I have been preparing for the conference I have to speak at on April 17. Today one of the coordinators called to discuss my presentation. She had a few questions. As I answered her, I found myself getting choked up. She also has a child with a disability. I said I couldn't believe after all this time, here I am talking about Amber's feeding issues and her disability, and I am getting emotional. It took me off guard. I guess I don't usually have people ask me about what it was like when we first found out or about the key people who helped us in the first year. I think about some of the doctors that wouldn't take me seriously. And then I remember the doctor who first told us about Rett Syndrome and that she thought Amber had it. I remember her with fondness. How direct she was with me and yet how kind she was. Finally someone heard me and we could move forward and start helping Amber.

Wednesday we have rehearsal. I am still not nervous. This is crazy that I am going to speak in front of so many people. (I still don't know how many.) My second all time fear is speaking in public. (My first fear is spiders.) Thank goodness I will be reading most of my answers. I have said this before, but I know God has a plan for me to continue speaking. I have felt this for a very long time.

Amber is having seizures again. Ever since school started. Is it because she is tired now? During her spring break there were none. She got plenty of rest then. Now she is having the seizures where she quits breathing and turns blue. I don't even call the doctor anymore. I guess I better get my act together and call. Do you suppose I am just getting used to all this? I don't know if that is good or bad.

We are able to get the van fixed so I can drive it. It goes in Monday to get an extra seat put in and the brackets to hold Amber's wheelchair. All this is being done as a trade for the guy keeping the parts to the steering column and whatever else he takes off. It will be done in two days! How cool is that?!

Today was a gorgeous day. Amber went outside with all of us and loved it.

The Lion King was great. Amber absolutely loved it. She stayed awake the entire three hour show!! We were near an Exit sign and she kept looking over at it the entire time. She didn't know whether to watch the sign or the show. That's the kind of stuff that catches her attention....yeah, an Exit sign! But seriously, she loved all the animals and the music and everything about the show. She rocked back and forth and had a big smile on her face most of the time. Thank you Make a Wish!

Who else is reading this and not signing the guest book? Sign it! Please!

Wednesday, March 26, 2008 6:37 PM EST

Amber is doing SUPERB! It has been at least a week with NO SEIZURES. All I can think of is she is getting lots more rest because she is on spring break. She is so content and happy. Very little crying going on. She is home with mom tonight all by ourselves. She is able to watch the kiddie cartoons she loves. When there are big kids home, she hardly gets to watch them. She is all smiles right now. It is too cute!

So the latest is Amber lost her first tooth on Monday. And when I say lost, I mean lost. We never did find it. I saw it was extremely loose and so I wiggled it, but it wasn't ready to come out. About an hour later I noticed it was gone!

The Broadway show The Lion King is in town. I wanted to go in the worst way, but the tickets are too expensive. Last week I got an email from Make a Wish that they had 40 tickets to give away, first come, first serve. So the whole family is going tomorrow night!!! I think I am more excited than the kids! I think Amber will absolutely love it.

I put Amber in her walker today. She is now able to move around in it much better than she used to. She was able to get over to a shelf of books and she knocked a bunch to the ground. I pretended I was mad at her and she just loved that.

Please sign the guestbook. I would love to know who is still checking on Amber!

Wednesday, March 19, 2008 7:40 PM EST

Amber has been extremely sick this week. For a couple days all five kids were sick!! That has never happened to us before. Amber has had a cold, fever, cough & constant bloody nose. I have a humidifier running in the house and a vaporizer in her room. Today is the first day she has seemed semi-normal. She is so loveable when she is sick. She has such an intense eye gaze when I hold her. The bloody nose was such a pain. If she sneezed or coughed, she would spray blood everywhere! Everyone is back to normal, except for Tori and Amber. Imagine that. The two buddies giving each other their sickness.

I just got confirmation for our Rett clinic in Chicago. Our usual doctor, Dr. Glaze, might not be there, but another will come in his place. I am actually quite happy about that. The other doctor, Dr. Percy, is well known in the Rett field and I would love the opportunity to meet with him. He is every bit as qualified as Dr. Glaze. They are THE two top doctors in the world on Rett Syndrome. He comes from Alabama.

I received my questions for my presentation at the feeding conference next month. Wow! It is much more extensive than I thought. Everything is rehearsed and planned ahead of time. I have alot of questions to answer about how we deal with Amber. Then they are submitted to an editor. They will make changes to what I have wrote and then we will rehearse it in the next couple weeks. There are some strict guidelines to follow. Now I see why I am getting paid so much for an hours worth of my time. It is taking much more than that to prepare. I am still very happy to do this and I know it will be a great experience.

Amber is going on an Easter Egg Hunt at our church this Saturday.

Sunday, March 16, 2008 :03 PM EST

It has been a long time since I've updated!

Amber is continuing to have seizures. Some days she has a few and some days none. Right now she is sick. She seems to have a slight cold, a fever & a barking cough. She is VERY shaky, but seems to be content. She enjoys being held and talked to.

I had her IEP meeting last week. We went over the goals for next year. She is doing SO WELL. She can now walk in her walker (when she feels like it). Last week they tell me she walked across the classroom. That is so neat to hear! She is reaching and making choices. She picks what she wants for lunch each day and is improving and learning at school. I am very happy with how things are going. She has a best friend at school. A BOY friend. He is a sweetheart and has a sad story. I don't know the details, but he is in her class because he was hit over the head with a board and alcohol was involved. Now that is sad!

We go to Chicago next month. We will be meeting with the doctors from Texas. I am somewhat looking forward to our mini trip. This time I am taking Jay, my soon to be 14 year old. He will be a tremendous help in lifting Amber and her wheelchair.

I have been asked to speak at a conference the day before we leave for Chicago! I am getting quite a few opportunities like this because of my participation in Project DOCC. By the way, I have only interviewed with one doctor so far. They say they are still getting this program up and running and to be patient. (For those who are new to our site, Project DOCC is a program where parents teach new doctors about life with a handicap child.) I am totally fine with it since my schedule is already tight! Anyway, the conference is about Feeding Problems in Infants and Children. They want me to speak, along with a couple other parents. I originally said no because it is the day before our Chicago trip AND I have to work that day, but they said my child is the only one with a feeding tube, so they are especially interested in what I have to say. I get paid $150 for speaking!! Whoo Hoo! I still am not used to speaking in front of people so I am quite nervous about it. I seem to be put in these situations more and more and I know God has a plan for me to speak in public. I just need to get over my fears!

Remember we got a van given to us? It has a lift in it and is made for a handicap person to drive. Well, we got it up and running. I even drove it in a parking lot once. Karl and I are somewhat in disagreement about the van. He wants to keep it as is. I want to trade it in for a normal van with a lift. Believe me, you have to be a rocket scientist to drive this thing!!!!!!!! (Karl thinks it is a piece of cake.) There are buttons and levers to push to make the thing operate. I don't need the extra hassle! I am hoping to contact a place that deals with these type of vans and see what they can do for us.

I am sure there is more to tell, but I can't think of anything else right now. I never heard about Amber's latest test results from her bloodwork. No one at the doctor's office volunteers information. I always have to follow-up and I'm not real good about that myself!

Thursday, February 14, 2008 6:47 PM EST

I stopped in to see Amber at school today. I was so impressed with how well she is doing!! Amber was sitting at a table with the rest of the kids. Now when I say sitting, I mean sitting in a chair without arms. They rigged it up so her feet/legs are strapped to the chair. This helps her to balance! If not, she would topple over. She is doing the rest herself. She rarely falls over. There is a teacher on one side and a bean bag chair on the other. So Amber sits at the table with the rest of the kids! After that, they moved in to story time. Amber "walked" over there (stopping on the way to grab at a boys gift bag hanging on his wheelchair, of course) and sat in a chair. Again, her feet/legs were strapped to it. She was able to sit with the rest of the kids as they read books!!! You can't get any more normal than that folks! I just love seeing her be with the other kids doing what they are doing. Amber was very happy to see me and was definitely showing off. I talked to her teacher and we are going to take our puppy in to see the class. I will definitely take pictures!

I am taking Amber to get the rest of her blood work done on Saturday! I have much guilt for not doing this sooner. Amber is having more seizures and I didn't get through to the doctor today. The change in her meds isn't working. Other than that, she is happy and doing well.

I see the mother of a Rett girl didn't make the cut for American Idol.

Friday, February 8, 2008 9:08 PM EST

Amber is doing well. She is over being sick. But now the seizures have started up again. They slowed down for a little while, BUT she was agitated and shaky so we had to lower the dose of one of the meds. So now we are having problems again and they seem to be getting worse.

I still haven't taken Amber back to get her bloodwork done because I haven't had time! I plan on going back on Monday morning.

Did I ever mention there was a contestant on American Idol that has a daughter with Rett Syndrome? How exciting is that. They actually did a spot about it, which you can see at

http://www.youtube.com/watch?v=0SOLtQF-KmM

This is exciting! So many more people have now heard about Rett Syndrome. What is really great is Angela Martin (the mother) can actually sing good! So you know who I am voting to win American Idol!!

Saturday, February 2, 2008 2:37 PM EST

Today I got Amber's bloodwork done. Three pokes, two nurses and one crying kid later they were able to drip some blood out. A couple hours later I got a call that one of the vials of blood clotted and they need to draw more. I told them we would come back some time next week. I'm not putting her through all that again today. Also, we are on our second urine bag. I am having trouble collecting it.

Amber seems to be doing better today. She's not sleeping as much. She even smiled a few times. I am loading her up on Cheerios, one of her favorite foods.

Thanks for checking on Amber!

Friday, February 1, 2008 8:29 PM EST

Amber is still sick! The fever is gone, but she is miserable. She still has a cough and cold and sleeps alot! She is very white and has no energy. Because of all the sleeping, her new wake up time is 4:50 am. Like clock work, she starts yelling for me every morning. And she is hungry. It's not enough to let her watch tv. And then the puppy gets woke up and she has to do her business. I'm a morning person, but not that early! Hopefully we will get back on track next week. Tomorrow I will take Amber to get her blood work done.

That's all for now.

Tuesday, January 29, 2008 6:29 PM EST

Amber is really sick. She has a 103 temp and a bad cold. Also, she only opens her eyes if she has to, and when she does, they are very red. She also is having bad tremors. As she is sleeping, different parts of her body are shaking. This also happens when she is awake.

We took her to a scheduled doctor appt. (neurologist) and he has asked for a bunch of bloodwork be done. Also, we are checking for a UTI. He has changed her meds level again and we are going to continue to make changes over the next couple months. The tremoring is most likely caused by her seizure medication. It got rid of the seizures, but it caused other problems! Also, Amber has been very cranky and getting worse. She is definitely not herself.

I forgot to mention Amber was in our local paper a few Sundays ago. There is a picture of her with her dad. You can read it at:

http://toledoblade.com/apps/pbcs.dll/article?AID=/20080120/NEWS32/801200304

MEDICATION UPDATE:

30 mg. Prevacid
100 mg. Zonegran per day (changed from 200 mg.)
75 mg. Topamax two times per day
2 tsp. Senna every other day

Friday, January 25, 2008 8:50 PM EST

Here are pictures of Amber's ramp.






It is so nice to wheel Amber out the door and to her bus, especially in this cold weather!



Amber got a poncho for Christmas. It is especially made for wheelchairs. It is short in the back and has velcro all the way up the front. We are able to put it on her without going over her head (which makes for very messy hair) and then we just velcro her up. Warm and cozy!



We got a new puppy!



Her name is Ginger. She is five weeks old and a Chinese Shar Pei. We LOVE her! She is fun and full of mischief. Amber gets to hold her and knock her around. (That's Amber's way of petting.)

Amber's seizures are MUCH better. She is a little cranky some days, but not bad. I am watching her closely. Next week Amber is going on a field trip with her class bowling and to McDonalds. Amber has to stand in line and order her own food at McDonalds. Also, when bowling, they have a special thing that allows Amber to walk up and push the ball.

Nothing else going on here.

Saturday, January 12, 2008 9:40 PM EST

Wow! Christmas was busy and fun and I'm glad it's over.

Amber has been having some major seizures. Last Saturday (1/5), Amber had a seizure and then her whole body shook for at least 1 1/2 hours. I could never really tell if she was having more seizures or if the shaking was just the after-effects of the first one. I had her in the van, ready to take her to the hospital and suddenly she calmed down. So we didn't go. Then on Wednesday evening (1/9) she had another seizure and shook afterwards for quite awhile. This wasn't as bad as Saturday, but it sure made me nervous. Then later in the night she was shaking alot and even during the night Hayley woke me up to say Amber was having a seizure. I wasn't quite sure what to do. She stayed home from school Thursday and Friday. Thursday she slept the entire day. Probably because she had been up all night the night before. I called the doctor Thursday and he raised her medication considerably and changed the type of pill. She used to take sprinkles (capsules with sprinkles inside) and now she has started capsules that we crush. Sometimes the sprinkles would get caught in her tube. I had no clue there was a different kind of pill we could give her!! So far she has been fine and no seizures for two days.

I read an interesting article from the Rett Syndrome Assoc. It stated: With a population of 1.3 billion, it is estimated that around 1000 children born each year in China will be affected by Rett Syndrome. Therefore one would estimate there to be 30,000 girls and young women aged 30 years and under with the disorder. To date in total only 200 cases have been diagnosed in China. The first of these was diagnosed in 1987.

Amber is doing extremely well in school. She is reaching for things and almost daily I get a report that she has made choices and grabs for things more than ever. I also get notes stating she is "out of it" often. I think the seizures have really been messing her up and hopefully things will be better now.

The ramp was finished on Christmas Eve. I LOVE it. I will post pictures of it another time.

Thanks for stopping by!

MEDICATION UPDATE

Topamax 75 mg. two times per day
(switched from sprinkles to capsules)
Zonegran 100 mg. two times per day
Prevacid 30 mg. one time per day
Senna 1 1/2 tsp. every other day

Tuesday, December 25, 2007 3:53 PM EST

Merry Christmas everyone.

I have read some striking emails today. People often get sentimental on Christmas....as they should. I would like to share one that especially touched me.

Merry Christmas.
Love, Tami



Merry CHRISTmas! I hope you are reading this email on some brand new fancy electronic gadget gift you received. I also hope your Christmas day has brought you nothing but joyful memories filled with smiles, laughs, gifts, and of course lots and lots of cookies.

Last but certainly not least, I hope that the true meaning of Christmas hasn't escaped you this year. Believe me I know it's easy to lose sight of the real Christmas message amidst all the worldly 'stuff' we surround ourselves with.

While I definitely know that some stuff is cool---hey, I enjoy watching Jack Bauer kick butt on a big plasma HDTV as much as the next guy---I also know that all of the 'stuff' in the world can't fill that void in our hearts...only one thing can: God.

During the Christmas season we concentrate so much on the birth of the baby that sometimes we lose sight of the true message of Christmas. It's not that He was born that makes Him remarkable. What's remarkable---and the most powerful thing that you could possibly imagine---is that He died... and He died for you. If the end of that baby's life didn't end the way it did we would not know anything about this baby.

My mother committed suicide when I was 13 and for so many years I tried to fill that empty space in me in all of the wrong ways. My mom was an alcoholic and she filled the void with booze and drugs. I followed in her footsteps and tried to do the same thing---I became addicted to drugs, booze, and topped that off with seeking fame and money. Worst of all, I was just a miserable human being to be around---I wasn't a good person.

I hadn't learned the lesson that stuff is never going to fill you up. Fame is never going to fill you up. Money is never going to fill you up. Work, accomplishment, booze, drugs, sex, you name it---will never fill you up. You will never find eternal happiness there. Sure, you will find fleeting happiness but then you need more. You become addicted to it and that doesn't last. Everything that the world can provide is like crack cocaine -- no matter how much you have you will always crave more and the emptiness will remain.

Believe me, I tried just about every way to fill that emptiness before I found God and none of it worked. There's only one thing that can fill the void and it's the Christmas message. Not the Christmas message of 'be nice to people' or the presents or even the manger. The true Christmas message is that He existed so He could die for our sins. His journey, from manger to cross, gives us a path to salvation. He died so you could fill the void---with Him.

I really, truly believe it because I've seen it work in my own life. And for as much as we want to make it about Frosty the Snowman and Santa, and stuff---that's the real meaning of Christmas: Redemption.

I pray this Christmas that you find what I have found---and finally, once and for all---fill the void.

Merry Christmas,
glenn (Beck)

Sunday, December 16, 2007 10:02 AM EST

Don't get too excited people, but I am updating twice in one week! It's a snow day today! Yee Haw! We are snowed in!

I thought I'd share some pics with you today.



We got a corn stove. Our heating bill was so high that we needed to find an alternative source of heat. We now pay 1/4 of what our oil bill was. We burn corn!! It heats our whole house. The upstairs sometimes gets chilly on really cold days. When that happens, we use an electric oil heater. Notice Tori peeking through the hole from the outside.



Here is our finished stove in action. Any questions?



This is the start of Amber's ramp.



And another shot of the same view from farther away.



This is looking from the front yard.



And this is the same view only looking from the back yard. I am so excited to start using this ramp! It will help us so much on a daily basis.

Last night we attended our church's annual Christmas Extravaganza. Each year money is raised for a different organization or missionaries. This year we raised money for our friends, The Daileys, who live in the Philippines. They are home for a year and are missionaries from our church. We raised over $15,000 last night. It was the largest amount ever collected at Christmas Extravaganza. Each person attending was to bring in a wrapped gift and then there was an auction. It was extremely fun and to say we laughed alot is an understatement.



Karl and I hosted a table. Each host was to decorate their table in whatever way they wanted. Some chose a tropical theme, others chose a traditional Christmas theme. One table even had a Harley Davidson theme.



Look closely at Karl's handiwork.



I did some, but I have to give most of the credit to Karl.



When we got to church and saw many of the tables that were so beautifully decorated, we just looked at each other. We were both having doubts.



As the night when on, we found so many people were oohing and aahing over our table.



Who would have known. We got first place!!!!! We received a huge gift basket of food items made here in Toledo from www.tasteoftoledo.com. How cool is that!!!

Thanks for your faithfulness in caring and checking in on Amber. I love your guestbook entries!

Friday, December 14, 2007 8:47 PM EST

Hi Everyone. Amber is doing great! She is happy and such fun to be around. She is so full of personality. She gets lots of hugs and kisses on a daily basis from all of us.

Each day we get an update on Amber's day at school. We have a notebook that we correspond with the teacher in. To give you an idea of what we read, here is today's update:

"GOOD day! Wonderful mood....good worker. She is doing SO WELL with making choices!! We have been telling her to look at us ("look at me") and then her choice is more obvious. (She looks at her choice, then at us.)
Ate well! 1/2 pizza, all beans, all peaches, some juice. Enjoyed Northwood H.S. choir in afternoon. Still has a runny nose. **Walked all the way to the library today (down the other hallway!) She was laughing!!"

Now is that a great teacher or what!! We have been so blessed with our school district. I am sooooo happy with how things are going. Yesterday they went on a field trip to the dollar store to pick out a Christmas present for the gift exchange in their classroom. Afterwards they went to Frischs for lunch. It is because of this teacher that Amber is doing so well. Things could be much different if Amber sat in a wheelchair all day. She has someone who believes in her and I so appreciate that! I am afraid the teacher doesn't really know how happy I am with her. Words can't express my appreciation.

They started Amber's ramp today!! I will take pictures of the progress and post for you. We are having the ramp put on the side of the house off the side of our enclosed front porch. Karl was going to put the door in (as we have windows on the side of the porch, not a door), but the guy doing the work offered to put it in his quote and see if it would fly with insurance and it did!!! He said he was shocked they approved it. He said things like that never get approved. We are putting the ramp off the side of the house by choice, not necessity, which is actually costing more money.

Amber is continuing to have seizures periodically. The breath holding is much better. Each day that she has a seizure, that evening I give her extra seizure medicines. It seems to be working well.

I never did hear back about the EEG and I just haven't had the time to call about it.

I know there is more to tell, but I can't think of anything else at the moment.

I hope you all are enjoying this Christmas season.

Thursday, November 22, 2007 8:50 AM EST

Amber finally pooped Tuesday afternoon. She was whining all morning and as soon as she went, she was giggly and happy. She has been happy ever since. She has gone a few more times, but seems to have a slight fever. I am concerned she still has some blockage, but we are working on it with medicines. I am just happy she isn't in pain any longer.

Amber is having seizures where she quits breathing and turns blue. Yesterday she did it three times. I am starting to really get concerned about this. I have consulted with other mothers through my internet support group and some have this happen to their daughters also. Some have suggested getting her some oxygen to have on hand, which I have been thinking about anyway. So I will pursue that road. Of course, we need to get the seizures under control with medicines and that would also take care of things. But we haven't had very good luck with the meds lately. I haven't heard back about the EEG.

People can have seizures that last for different lengths of time. I have heard people have 15 or 20 minute seizures, or even longer! Now what if her seizures start lasting longer. They do seem to be getting just a little longer and that really worries me. A person can't go that long without oxygen! We are just trying to watch her carefully.

Since it is Thanksgiving, I just want to say what I am thankful for. On Tuesday our church had a service and I spoke at it. I was scared out of my mind!!! I at first said I couldn't speak in front of people, but then knew the Lord was pushing me and wanted me to, so I said yes. I prepared for it and I still feel like I was a stumbling fool. Anyway, what I tried to say that night was how thankful I was for the trials we have gone through--financially, Amber & in my marriage.

I was giving thanks for the bad times we have had in the last few years. Our finances have been a mess because of the large job Karl didn't get paid for. (By the way, we did get half of the money about a month ago, but it scarcely made a difference after all this time because of attorney fees, late fees and interest.) Anyway, not getting paid that money was one of the best things that has ever happened to us. God totally showed us how we were spending HIS money unwisely. We have really changed our ways.

I then spoke about Amber and what our entire family goes through because of her. We are better people because of her. We all have a special bond with her and she has changed who each one of us is because of her special needs. I am grateful to be blessed with a special needs child.

And lastly I spoke about how all this took a toll on our marriage. This past year we really had a tough time. Many people may not have noticed this. (Aren't we all good at pretending to the outside world that everything is moving along just fine.) We had a turning point and God really showed me how I was focusing on the faults of others (especially my husband) instead of getting my own act together. God can take care of my husband. I need to do my own part. It was life changing. We have been married 17 years and we are closer now than we have been at any other time in our entire marriage. It really is a "God thing".

So I hope you all have a wonderful Thanksgiving and can find some things that you really are thankful for.

My girls are making Amber laugh right now. It is a wonderful sound. I have to go give them all a kiss.

Happy Thanksgiving!

My brothers and sisters, you will face all kinds of trouble. When you do, think of it as pure joy. Your faith will be put to the test. You know that when that happens it will produce in you the strength to continue. The strength to keep going must be allowed to finish its work. Then you will be all you should be. You will have everything you need.
James 1:2-4

Monday, November 19, 2007 7:08 PM EST

Amber hasn't pooped since Friday. She went to school for about an hour today and then we brought her home. She has been crying off and on all day. I have done just about all I can do for her. I am going to give her another dose of medicine tonight. I am starting to get a little worried. That's a long time not to go!

My interview with the doctor on Thursday morning went extremely well. I prayed on my way there that I would feel comfortable talking about how much God plays a big part in our dealings with Amber. Well, the doctor was a Christian! So that was easy! It was really neat talking to him. He went to a Christian college and has been on two missions trips. We really hit it off and I think he is going to be an absolutely wonderful doctor. I plan on giving him a high evaluation and I hope he does the same for me! He seemed to be a very kind and caring person. What an awesome start for my first interview! We talked for two hours.



I came across this picture and had to share. It's one of my favorites. It is a picture of Amber and Hayley at Hayley's Honor Star Crowning.

Hope you all have a very blessed Thanksgiving.

Monday, November 12, 2007 9:57 PM EST

Today Amber got an EEG at Toledo Hospital. It was pretty uneventful. She was happy to watch Teletubbies during the one hour procedure. She really was quite cranky today and I ended up taking her home instead of going to school after the EEG. She slept most of the day. This evening she finally went #2 and then back to sleep again.

Yesterday we went to the Make a Wish Holiday Party. Amber's gift didn't come in (she will be getting special needs mittens that have velcro on them). So they gave her a jacket instead. (And will give her the mittens when they come in). No, I didn't take pictures because I forgot my camera!

The Parent-Teacher Conference went well on 11/2. Some of the highlights were: Amber is much more alert this year. She turns when someone calls her name. She notices different people/strangers. She is able to walk around in her walker! She LOVES books. She follows along when the teacher points out letters during calendar time. She is definitely reaching for more items and has better hand use. It was so nice to hear how well she is doing. Amber LOVES school and has so much more going on than people give her credit for.

That's all for now!

Tuesday, November 6, 2007 6:54 PM EST

Amber is continuing to have seizures. We have not adjusted her meds at all. I asked if we could, but the doctor wants an EEG done first. She will be getting a 1 hour EEG some time in the next couple weeks. I am waiting for a call back from the doctor with our appointment time. Sometimes the seizures are really bad, and sometimes they are small ones. School has been sending notes home stating she is having really bad ones. They have now sent home a Seizure Health Plan form requesting what steps are to be taken and when they should call 911. I was asked for something similar when she was in preschool. The doctors weren't much help. They state the school should follow their (the school's) protocol for emergencies. Soooo, that basically leaves it up to me. The school requires more info. than that. Honestly, I don't know what to tell them. Can I just put, "Use your common sense"? I guess that won't work. I really am in a dilemma as to what I am supposed to put. She turns blue sometimes and yet I don't feel it is necessary to call 911 each time. On the other hand, I don't want them to not call when they might really need to! I am going to start out by faxing the form to a couple of her doctors and see if I can get a good response this time, and then take it from there.

I called last week about the ramp. I called her caseworker and her supervisor. I got NO RESPONSE. So today I got in a mood and called the caseworker, her supervisor, HER supervisor, Amber's old caseworker, AND Ohio Job and Family Services. Guess what? I got a response from ALL of them! Ha ha ha ha! I am told she will have a ramp before Christmas! Can you believe that! I think it might have been the complaint I filed with Job & Family Services. What is really funny is the caseworker states she needs to meet with us THIS WEEK, for Amber's yearly renewal in their program. This is all very amusing since I don't ever hear from the lady. She definitely hasn't been doing her job. I am really excited that we might actually get a ramp. Now why didn't I get on everyone's case a long time ago??

Last Friday we went to the Fall Festival at our church.



Amber got her face painted.



Here Amber is playing a game. Look closely. She has to get the toilet paper roll in the bucket/toilet. We put the TP under her hands and as soon as she raised them, the TP would fall into the bucket.



This is the cookie Amber made. There were squeeze bottles with frosting in them. She was really going to town squeezing the bottles with me. Once she finds something she can do, she works really hard at it.



The kids got a huge amount of candy. This is just a small portion of it all.



Amber enjoyed herself that night! She only had one seizure and was very happy with all the noise and excitement.

I neglected to take pictures of any of the other kids. Oops!

Next time I will tell you about her Parent/Teacher conference. Thanks for visiting!

Sunday, October 28, 2007 8:12 PM EST

Amber is doing much much better. The antibiotics seemed to help. She stayed home from school on Wednesday and Thursday. She started getting extremely irritable. I am so glad she is back to normal. Today she stopped breathing during church. Just when I think I am going to panic, she starts breathing. It really takes alot out of her. She is very shaky and white for at least an hour afterwards. It is so funny (I guess not really) that this is all going on and very seldom does anyone know. We were actually sitting in church and she turned blue and then eventually started coughing and then she was fine.

I got a call from Project DOCC. FINALLY! I have an interview with a new resident on November 15. I can't wait. I have so much I want to say. We have a list of 50 questions he will ask me and I will answer. Then I get 15 minutes at the end to get on my "soapbox". Did I ever tell you what my "soapbox" is? I want doctors to take parents seriously. When a handicap child is crying for hours on end, it is their duty to help the parent and child. That means the child may need to be given a drug to either knock them out or take the pain away until an answer can be found. Amber went through far too much because I was told "Crying is common for girls with Rett Syndrome" or "We've done everything we can and we find nothing wrong. Sometimes these girls just cry." Never ever should that be a satisfactory answer for someone with a disability. People cry for a reason! It is because they are sad or in pain. So I can't wait to tell this upcoming doctor how important it is to use the drugs available to us in such emergencies. Too many people drug their kids when not necessary, but handicap crying children and/or adults need to be taken seriously. Well, that's my soapbox.

We painted the girls room. Hayley and Tori picked out the bedspreads and the colors for their walls.



This is a before picture.



And another.



And this is after.



Amber loves sitting up on the top bunk with her sisters. She loves the colors too!

Tuesday, October 23, 2007 7:16 PM EST

Amber is still not herself. I have been racking my brains trying to figure out what is up with her. Then I remembered, about two hours before we left for Cedar Point, (Sept. 28) the doctor's office called and said her test results came back with bacteria in her urine. I told her she has to be kidding. We are leaving to go out of town and I don't have time to get a prescription. Besides that, she was acting fine. So the nurse said she would call me back after seeing what the doctor says. I never heard back so off to Cedar Point we went. So now I am wondering if this so called bacteria is messing with her. She isn't crying, she is just acting different....having more seizures, leaning to the side, staring off into space. Just not her usual perky self. So I called the neurologist today and the scoop is the Neurologist's office called the Pediatrician and the Pediatrician's office was supposed to call in the antibiotic (and me!), but never did. (Did you follow that?) So I heard back from both today and they were very apologetic for the goof. Really, I could care less, I just want the antibiotics now. (Which we got.) I realize for us a urine infection (or whatever it is) wouldn't be a big deal, but for Amber, I think it throws her whole mind and body off. Well, that's my un-educated-mother-knows-best guess. I am just thankful they are dishing out the antibiotics without another appt. that I don't have time for.

Thanks as always for visiting.

Monday, October 22, 2007 7:19 PM EST

Amber's seizures are bad. I will call the doctor tomorrow. At school she had one at lunch. She stopped breathing and her eyes rolled back. When she came out of it, she did the "typewriter" seizure. I am giving her as much medicine as I can. I think she is only having a couple a day. It's just that they are so intense.

Nothing else going on here!

Thursday, October 18, 2007 6:04 PM EST

Everyone is healthy now!

Amber has been having a terrible time with seizures. The teacher sent a note home today that they almost called me. She was very out of it and had seizures off and on all day. (I really do wish they HAD called.) The teacher calls her "new" seizures "typewriter" seizures. It is because she jerks around so much like a typewriter. I am sure this makes no sense, but if you saw her, you would understand. So tomorrow I may keep her home. It is somewhat discouraging to have Amber be so happy and then out of nowhere something goes wrong. I suspect her levels are too high again. This is from giving her the extra dosages. BUT, usually that would mean the seizures wouldn't be around. This time we have both the seizures and her being out of it.



We got a new swing for the kitchen. Amber grew out of the old one.

Amber got her wheelchair adjusted this week. We are in the process of ordering a new seat now. They state by the time the seat comes in, she will need it. Yes, it takes that long.

Amber got her school picture today. It is very cute. I am always so happy to see a good picture of Amber. It is so hard to get her to sit up straight, look at the camera or smile at the right time. I will post it at a later date.

Yesterday I ate lunch with Amber for the school's parent luncheon. It was another "out of it" day for her. Once I arrived, she seemed to get much more alert. And when I told her Daddy would be there, but I forgot to tell him about the luncheon, she immediately turned to me and gave me a big smile! She cracks me up! I am sure she was thinking "Mom, you are such a dork, but it's ok".

I called again about getting a ramp on the house. The response is everyone is having the same problem as us. I heard this in a message and I just don't buy it. As the weather gets colder, this will become a huge problem. We can't have Amber waiting outside for the bus in feezing cold weather. A ramp would be so helpful so we could wheel her out just as the bus is pulling in. So I am going to contact our old case manager, (she was pulled from our area) who was EXCELLENT. She told me if I ever needed anything, to give her a call....

We are thankful Amber is at the very least not crying. She doesn't seem to be in any pain, just not herself.

Thanks as always dear friends and family for taking an interest in Amber. Thanks for signing the guestbook Karen from scrapbooking!

Friday, October 12, 2007 7:04 AM EST

About 4:30 this morning I woke up so I checked on Amber. I don't always check on her, but since it is so cold now, I wanted to make sure she was still covered and warm. What I found was she had thrown up all over herself! So I had to give her a bath. After changing her bedding and giving the bath, I got her all snug back into bed and she immediately went right to sleep. Just as I was falling asleep, I heard her throwing up! And so went the rest of the morning. I don't think she has anything left to throw up!

She has started having seizures again more frequently, (and this throwing up won't help since I'm sure all the meds came up), so I have increased her dosage for a little while.

Amber is continuing to do well at school. They send notes home that she is very alert and giggles alot. Daddy usually puts her on the bus. Yesterday morning I did and she wasn't smiling like she usually does. As soon as Daddy came outside, she started smiling!! I think something as simple as that throws her off. She is used to him putting her on the bus! Also, I think she favors him over me. Imagine that!

Will keep you posted on our sick little girl. I never know if her being sick can quickly turn into something serious as I'm sure she can get dehydrated quite easily. Also, she feels very cool and clammy. (Is that a word?)

Thanks for checking in!

UPDATE: Sunday, 12:31 PM

Amber is still not totally ok, but at least no more throwing up. All children in our household have been sick. Right now the three girls are sick: Hayley, Tori and Mariah. Some know how to hit the toilet better than others. I told Mariah she needs to throw up in the toilet and she said "No way mom. That's yucky!" Needless to say, I have lots and lots and lots of sheets and blankets to wash.

We had to cancel Amber's doctor appointment on Friday. It is re-scheduled for tomorrow.

Thanks again for checking in!

Saturday, October 6, 2007 7:24 PM EST

Amber is continuing to do well.

Last weekend we went to Cedar Point.



Jay took a group of friends.




They had a tent together next to ours. It got extremely cold at night, but was beautiful during the day.



We had a heater running all night in our tent, but it didn't really help.



Amber loves camping.



While we were at Cedar Point, someone gave Amber this dog.



Amber rode around in the wagon and was able to sleep whenever she wanted.



Mariah too!



Amber rode a few of the rides. But we found it seemed to disorient her so she didn't ride too many.





Karl and Hayley rode this insane roller coaster called the Dragster. You couldn't pay me to ride it! This is them right before it took off. It goes from zero to 120 in 4 seconds. (or some crazy speed like that.) The whole ride lasts about 45 seconds. Crazy!

I have an appointment on November 2 to state my case about Amber needing air conditioning in her classroom and on the school bus.

Thanks for checking in!

Thursday, September 27, 2007 8:37 AM EST

The seizures seem to be gone. Amber is doing well and is very happy. We didn't really do anything different to stop the seizures. She did get her levels checked and we don't have the results yet.

Amber wouldn't stand on her right leg last week. So I checked her out good and found a blister on her big toe. So I got her new tennis shoes.



Amber loves going to school.



This is her bus in the morning.



She watches the fish in our pond while she waits for the bus.



She loves having a routine every day.





On the weekends when she is home, it really messes her up not going to school. I know she wants to be there and doesn't like hanging out with us quite as much!





And this is her bus in the afternoon. She is always the only one on the bus. She sits in the very back.



Each afternoon we lay her on the couch and she falls asleep immediately. School really wears her out!

We are heading for Cedar Point this weekend and sleeping in a tent for two nights! Brrrrr! Again, these are free tickets we received from Give Kids The World! We are taking a wagon instead of her wheelchair. This way she can sleep easily and be more comfortable. Amber's wheelchair needs adjusted. She is outgrowing it and I am hoping it can be adjusted, but we haven't figured out how to do it ourselves. She has an appointment in October to see the wheelchair people. Insurance will only pay for a wheelchair every five years. I think it has only been three years so far.

No word on our ramp still.

Thanks for your guestbook entries. I enjoy seeing who has been here. It's like checking your mail every day! I am one of those people that runs out to the mailbox as soon as the mail has been delivered!

Thursday, September 20, 2007 7:55 AM EST

Amber has been having some strange seizures. We have only seen them three times, but she seems to have the seizure, then she jerks around for over 20 minutes. So I don't know if that is a seizure for the whole time or not. She even lets out little "squeaks". She did it at school two days ago, so I brought her home and she slept the rest of the day. We had blood work done yesterday and so now we just wait and see what happens.

Another center took over the management of PPC so they are back in business! I really don't know much else. I am sad for all the employees who went out and got other jobs, when they could have kept their job at PPC! They lost some good nurses. But I have to say my most favorite nurse should still be there! Yippee!

I have heard absolutely nothing on getting a ramp put on the house. I don't believe our case worker is doing her job and if I don't get some results soon, I am going to call our old caseworker. She was GOOD & she told me to call her if I ever needed anything. She will get the people moving. She's that type of person.

I haven't heard anything from Project DOCC other than they are still working on scheduling. I am shocked I haven't done any interviews yet. They said this is their first time doing this and to be patient. This is sure going to be hard having such a big gap between the interviews and being trained.

They finally got a new bus at Amber's school. It is one of the BIG busses. How silly. They come bring home little Amber on this huge bus. Just Amber and no one else. Even the bus drivers have a few comments about it. One told me they were supposed to get a small bus, but something got messed up along the way. So Amber rides the small bus in the morning & then comes home on the big bus. The small bus pulls into our drive, but the big bus can't. I just hate having all the traffic wait for us. It takes quite awhile to get Amber off the bus. At least five minutes. We are on quite a busy street and I am sure everyone is cussing us out. Ha! And what's worse is the bus driver will actually stop to talk to me instead of talk AND get Amber off the bus!

Mariah is sick. She has a temperature. (I'd tell you how high, but I can't seem to find the thermometer!) Also, she has completely lost her voice. I guess this means I should take her to the doctor, right?

This Saturday will be Karl and I's 17th wedding anniversary!!!!!!!!



Here's a picture of Amber and Daddy sleeping. I am sure neither one of them appreciate me posting this, but then, I won't tell if you don't!

Monday, September 3, 2007 8:47 AM EST

Amber saw Dr. Nagel, our neurologist, last Monday. After much discussion, we decided to leave Amber’s meds as is. I like Dr. Nagel so much. He said it was up to me if I was comfortable with the amount of seizures she was having. He was ready to start a whole new med and I just don’t want to go down that road. Amber seems to always have so many side-effects when taking drugs and I just don’t want to put her through it. We decided as long as she wasn’t having too many seizures and didn’t have the ones where she quit breathing, he was comfortable with that as long as I was. I did tell him I give her an extra 15 mg. every so often and he was fine with that. So we don’t see him for another six months. In the meantime, this week, Amber has had a few seizures where she quit breathing!!! I just knew this was going to happen! So I am raising her dosage quite a bit and it seems to be working. The nice thing is, I am never raising it to more than what was originally prescribed to her, but she couldn’t handle it and cried a lot.

Friday we left for Geauga Lake. Amber did not feel good at all. She had and still has a bad cold. But off we went anyway. Karl and Jay are able to set the tent up in about 10 minutes flat! Not bad! We camped Friday and Saturday night, and spent Saturday at Geauga Lake. We were right around the corner from Geauga Lake and there was even a Starbucks on the way. Doesn't get much better than that! It was quite cold at night! Luckily we brought a heater. On the second night we decided the heater just wasn’t getting it, so we closed off ½ the tent and we all slept on the other side with the heater That helped quite a bit. Amber woke up each morning at 5am!! She was happy and giggly and I kept telling her I was going to spank her if she didn’t go back to sleep, which made her squeal even louder. She absolutely loves being told she is going to get spanked. I think it makes her feel like the other kids when she gets into trouble. While at Geauga Lake, she was quite miserable having a cold. So in the afternoon, we headed for the water park and let her have a good nap on a lounge chair.

OK, I don’t have any pictures from our trip because I left the digital camera at the tent when we went to Geauga Lake. Then when I did go to use it, the batteries were dead. I did take the other camera, but I have to get the pictures developed, then scan them, wah wah wah. You can all quit shaking your head now!

Once we left the campground to come home on Sunday, I spotted some outlet stores that were having a sidewalk sale and convinced the family we needed to stop at just “a few stores”. It was so much fun. I told everyone this was real camping! We found deals between $3-$5 at stores like Aeropostale, Limited Too, Gap, Ann Taylor, Carters. It was fun fun fun! Then we ate pizza at an outside stand. What a beautiful day!

I promise I will provide more pictures when we go to Cedar Point on September 29!

I wrote an article to The Toledo Blade about Amber’s daycare (PPC) closing, and it was printed! It reads as follows:

"Just four years ago, my child was diagnosed with Rett Syndrome. She was developing normally and then, suddenly, she started regressing at around 18 months old. We found a wonderful place to take our daughter to give us a much-needed break. It is called Prescribed Pediatric Center, a place where we know she gets quality care, lots of love, and interaction with her peers. It's a place that can't be found anywhere else in Toledo or the surrounding area.

As of Aug. 31, Prescribed Pediatric Center will cease to exist because ProMedica has decided to withdraw managing it. Now what do we do? There is nowhere else to go. Who wants to take care of my child, who sometimes stops breathing, is tube-fed, is in a wheelchair, and can't talk? We are told we are eligible for in-home care; that is, if my other children leave the home. There are no day cares or babysitters willing to take care of a tube-fed, non-ambulatroy, handicapped child.

This could be your story. You could have a child with a disability. It could happen at any time. It could be a car accident, a drowning accident, or maybe even a fall. You just never know what direction your life might take.

Shame on ProMedica for turning its back on our most helpless children."


I have to say, I don't know what I was thinking, but Amber actually started regressing around 8 months old, not 18 months old.

School is going better. I am trying to get to know the aides better and am feeling a little more comfortable with things.



Amber is now riding the bus and she absolutely loves it. I have to say it is making life much easier for us. Most days daddy gets her off to school, (because I am at work), but I was able to one day last week. Amber was just beaming when I started talking about her riding a big girl bus and I had never seen it and was she going to show me how she gets on it. She was SO excited. I was oohing and aahing about the whole thing and she was so proud. It was too cute!



I heard about something called an iGallop. It simulates riding a horse! So I used Amber's birthday money and got her one! Now we are able to put her on this at home without paying for expensive horse back riding. I still feel she misses out on actually being on a live horse, but at this time, it just doesn't fit into our schedule!!



When not riding it themselves, her sisters help her ride it.



Tori is constantly hanging out with Amber and having deep conversations with her that only the two of them know about!



Mariah had to get in on a picture too!

Saturday, August 25, 2007 10:45 AM EST

Amber started school on Monday. She has already missed 1 1/2 days of school this week. My heart dropped when I found out one of her aide's this year is a man. I have always known I will not allow men to change Amber's diaper, except her dad, of course. So I have talked to the teacher twice about this. I don't want to make an issue out of this, but wonder if I shouldn't have this put in writing in her IEP.

On Wednesday I decided to pay a surprise visit. Amber was laying in a bean bag chair when I got there and she was extremely hot. She still had her shoes and socks on, which I questioned. (Kids must wear shoes or at least socks so I know that is an issue for them at the school.) Let's forget about her health, we must follow the rules, even when a kid isn't walking! So I took Amber home. I was told she didn't eat much for lunch. (Gee, I wonder why, could it be the heat??) I then asked if she got a can of Pedia Sure instead--no. So needless to say, Amber didn't have a great day, although her first two days of school went extremely well. But it wasn't hot those days. Thursday I took her to school for 1/2 a day until it got too hot and Friday I kept her home all day because of the heat.

I find it amazing that Amber can't go to school because of the heat. The office and the teacher's lounge has air. I am still not ready to take on this battle yet. They tell me they can take her down to the office when it gets too hot. What is the point in that? She can't have school in the office all day. I believe the classroom needs to have air conditioning for these special needs kids and I have a doctor's note stating Amber can't handle the heat.

And then we have the whole bus issue. We are trying to have Amber ride the bus this year. No air conditioning there and there is only one handicap bus that can transport only ONE wheelchair at a time. There are three kids in wheelchairs in the school district. So they transport each kid separately. There is supposed to be a new bus coming in October.

So we are getting off to a little rough start this year, but hopefully it will get better. We have the same teacher as last year, just different aides.

Our Kings Island pictures have been found! They were hidden somewhere in our digital camera. Thanks for finding them Pam!



Here is the cookie for Amber's birthday. We ended up eating it for breakfast the next day.



This is the only ride Amber went on at Kings Island. We decided it was too much for her. With the heat and going around in circles, we were afraid it might mess up her whole day.



What Amber really enjoyed was the water park.








Amber shared a bed with her sisters. We slept in a tent! Amber was always the first one up!



Here was the long line at the Creation Museum. It was actually much longer than this, but I couldn't fit it into the picture.







This was a replica of Noah's Ark. Learning all about Noah's Ark was our most favorite part of the museum.



Tori



Hayley and Mariah

Friday, August 17, 2007 8:13 PM EST

Amber’s birthday was pretty non-eventful. She definitely knew it was her birthday. When she arrived at PPC and I announced to everyone what day it was, she got extremely excited and loved all the attention she got.

We had a cookie cake for her that evening. We all went swimming (her favorite thing to do). When we came in, I got her dressed, walked out to the kitchen for something & when I came back, she was asleep. That was it. She never woke up until morning! So we had her cookie cake for breakfast the next day!



On Monday it was Mariah’s birthday, so we went to Chuck E Cheese and celebrated. Hayley, Tori, Mariah & our friend Emma are in this picture.



Amber loved this particular ride.

Last weekend we went to Kings Island and the Creation Museum. I had a bunch of really great pictures....but somehow they got deleted off my camera. I am so disappointed not to be able to show them. Amber did so well. It got unbearably hot by 2pm on Saturday so we headed for the water park. She LOVED it and giggled and laughed when we took her through the different areas where water was spraying all over. Before that, we found stores and places that were air conditioned to get a break. When Amber seemed to be bothered by the heat, we got into air & she perked right up each and every time. We even went to the first aid station and they let us use a room to feed & change her! Cool! As soon as I said she has a feeding tube, they were quick to help out! (Hey! We know how to make the most of our situation!)

The next day we went to the Creation Museum in Kentucky. We were shocked to see a line out the door when we arrived 30 minutes after it opened. There were people there from all over the United States. We waited two hours to get in!!! It was SO crowded the whole time we were there and we really didn’t get to enjoy it. It was just so crowded. Our favorite part was learning about how Noah really could have built an ark and why many of the dinosaurs were completely intact when found thousands of years later. (That’s right, I said thousands, not millions, of years.) The dinosaurs died very quickly (because of the flood) and there wasn’t much of a chance for their bodies to deteriorate because mud and dirt buried them almost immediately. Unlike if an animal were to die now and it would decompose and go through a much different process. Very interesting how everything in the museum pointed towards what the Bible says and how what the Bible says really is true. It was fascinating to see how the flood probably happened. (We actually saw mini videos about it.)

"In the six hundredth year of Noah's life, on the seventeenth day of the second month--on that day all the springs of the great deep burst forth, and the floodgates of the heavens were opened.
Genesis 7:11

Amazing stuff! It really gave us a sense of how amazing our Lord is and how Adam and Eve really changed God’s original plan for us because they ate the forbidden fruit.

We are having a family birthday party for Amber and Mariah on 8/23. Mariah has decided to allow Amber to participate in HER party. It really is quite comical to see Mariah make these important decisions. We have talked about her birthday for at least the last three months.

I finished my orientation with Project DOCC, (Delivery of Chronic Care). I am so excited to get started with the interviews. I just wait for a call asking if I am available. I think this is going to be quite an experience for me. I get to be the Teacher! I have lots and lots of research and preparation to do for this. This is an opportunity for me to really make a difference in helping upcoming doctors make a difference in families lives. At the orientation we did role-playing. This helped quite a bit and was fascinating to hear what other parents go through. We each have a story to tell. If I choose, I can do this for up to five years.

Amber starts school on Monday. Her last day at PPC was yesterday. It was a little emotional leaving there. Our favorite nurse hugged Amber and then couldn't stop crying! I was so touched. We hope to see her again and really hope somehow PPC will be able to continue at a later date.

Amber's seizures come and go. Every few days I give her an extra dose of seizure meds and it seems to help. I don't want to give her too much because then she gets really really cranky. This whole week she has been back to her happy self.

Tuesday, August 7, 2007 10:52 PM EST

Amber is doing much better. She is very happy again, but the seizures are back. I am still trying to play with how much medicine I give her. The medicine seems to work, but when she gets too much, she is quite cranky.

Tomorrow is Amber's birthday. We aren't having a big party for her this year. I think Amber would rather have it that way! Usually she shares her birthday party with her sister Mariah. But this year Mariah, who will be four years old next week, has informed us she will NOT be sharing her birthday party with Amber. I knew this would happen eventually, but didn't think it would be this soon. Mariah has definite opinions and lets everyone know it!

We went to the Ohio RS picnic on Sunday. It was raining so it was indoors. I will show pictures at a later date. It was nice to see the older girls who could walk and the personalities each girl has.

I went to my first orientation tonight for Project DOCC. It is an awesome program and I am so glad I decided to be a part of it. There were about 20 parents there. We got extensive training on the interview process, home visits and being part of a parent panel board. Project DOCC is now a requirement for all residents at Toledo Hospital. Project DOCC has been around the U.S. since 1994. It was founded by moms! The residents are going to see first hand what we go through and what we think and how they can help families more. This isn't all about Amber, but about how her disability has affected the whole family. The residents will see where Amber lives, bathes, sleeps, how she is fed, etc. They will hear what we have liked and disliked from the moment we first got the diagnosis and how the doctors can make life easier for families AFTER they drop the bomb and then shove us out into the world with our new-found information about our child. I have soooo much I want to tell and will get the opportunity!

Emotions were high tonight and it was so neat to hear everyone's story. There were two doctors there. One is a mom of a special needs child and the other is the doctor that is over-seeing this program. He told his own story about why he has an interest in this program. It was quite moving to hear him. He had tears of his own as he spoke. I was so touched! He had lived with an aunt and uncle who had a child with Downs Syndrome.

We are leaving for Kings Island this weekend! If it is too hot, we will spend our time at the water park there.

Hopefully I will post pictures next time.

UPDATE August 8, 2007

Today is Amber's birthday! She woke up happy and when her daddy sang her Happy Birthday she started giggling and laughing. He picked her up and kissed and hugged her and she was all smiles and talked back in her own language! It was so cute! We sang Happy Birthday to her and she continued to be all excited. She is going to PPC for the afternoon and next week we are going to take her and Mariah to Chuck E Cheese for their birthdays. (Mariah will have her birthday party with family at a later date.) Tonight we will have cake and ice cream for Amber. I just love her so much and it just makes me smile when she is so happy.

Monday, July 30, 2007 7:31 AM EST

Amber has been doing just ok. I still don't know what is going on. I just keep trying different things. We lowered her meds back to what it was when she would quit breathing but was HAPPY. I haven't really seen many seizures. I am playing with the meds daily. Her neurologist was on vacation last week and I told the nurse I was going to do what I thought was best with the meds and she was going to tell the doctor when he gets back. I could have gotten advice from a doctor filling in, but I decided to just wait and do it on my own. Amber is definitely happier, but seems to have bursts of crying and then gets ok. It seems too much like when she has cramping and/or gas pains. This is starting to happen less and less, but obviously I would like her giggling and happy like she was just a few weeks ago, minus the seizures and breath holding!

Yesterday our church was packed because they combined the first and second services. We sat in the front row! (Not the norm for us.) The music was very loud and Amber stood through most of praise and worship. She REALLY liked it. So often when we are in church I see her head moving all over the place looking upwards. I always wonder if she is seeing angels.

Tomorrow I am attending a meeting at PPC to see what is going on there.

We are supposed to go to a Rett Gathering at Maumee Bay State Park on 8/5. I will be sure to take lots of pictures.

If all goes as planned, we are going to Kings Island the weekend of 8/10.

Amber's first day of school is 8/20.

And, of course, we have Amber's birthday coming up! Six years old!!! I just can't believe it. She is such a big girl!

I have to say, I have always worried about how I am going to take care of Amber as she gets older and bigger. A few weeks ago I told Karl it just seems like she is getting easier to carry some days. How can that be!!! He said it is because I am getting stronger. He says it has happened slowly over time. And it reminded me of a story....not sure if I ever posted this before, but it touched me so much when I read it........

There is a story about a farmer who could lift a full grown cow above his head.
Since the day it was born he went down to the barn and lifted it high above his head.
He didn't miss a single day.
Each day the calf was a little heavier but the farmer could lift it just as easily as he could the day before because he didn't notice the weight change.
This went on for years until the cow was fully grown.
His friends and neighbours were in awe of him and asked how could he be so strong? They said they couldn't possibly do it.
Some even went over to the big red cow and tried themselves.
They couldn't even move the cow.
He said anyone could lift it, but they disagreed and said he must be superhuman.

But some days the farmer went down to the barn and just stood staring at the cow.
He had no desire to lift it. He felt weak and tired.
The cow looked so big and heavy.
He didn't invite anybody around those days.
Nobody saw him creep back to bed feeling miserable.
In their mind he was always the strongest man they had ever met.
He knew differently. He was just like them.
His strength had built up gradually as the load got heavier over time.
But there were days when the load seemed even too heavy for him to bear.

On those days if someone dropped by unexpectantly he would rally his strength and do as he was expected and go lift that cow above his head.
This would make him feel a little better because it let him see how strong he had become.
Those days the cow did feel unbearably heavy but he still lifted it because he was expected to.
However no one knew the effort it took.
They all thought he was superman.
He knew he wasn't, he knew he had bad days but he also knew he could do it because he had learnt to.


MEDICATION UPDATE (effective 7/26/07)

1 30 mg. Prevacid per day
1 100 mg. Zonegran two times per day (sometimes an extra 100 mg. per day)
1 45 mg. Topamax two times per day (sometimes give an extra 15 mg. per day)
1 tsp. Senna per day as needed
1 TBS. Milk of Magnesia per day as needed

Tuesday, July 24, 2007 9:10 PM EST

The last two days Amber has cried when I have taken her to PPC. She is fine and then starts crying when I go to leave. This is so strange for her to do. Yesterday I rocked her before I left, and she calmed down. She cried this deep, sad cry. Not a pain type of cry, but just a sad one. She calmed down and was fine the rest of the day. Then today she started whining. I had to leave, but once I reached the hallway, she yelled "Mom"! Everyone heard. It was really quite shocking! So I of course came back in and gave her one more kiss. Amber is constantly surprising me with what she seems to know.

A few months ago I received a letter that PPC would be closing. But then in talking to the nurses, they said the letter was misleading and it wasn't really closing, but some changes were being made with their funding. Well.....they told me today they WILL be closing. They have lost their funding and they will close effective 8/31. Everyone is pretty sad. All the nurses are losing their jobs and alot of these kids have nowhere to go and some have single moms that work and won't have anyone to watch their kids. It's not quite as easy finding care for your handicap child like it is for a typical child.

I am going to participate in a program called Project DOCC. Project DOCC is a medical resident training program where parents of children with special needs help teach future physicians about the realities of daily life with a special needs child and the impact this has on our family. I have to go to a 7 hour orientation, for which I get paid $100 (Whoo Hoo!) and then I get paid $50 for each encounter with a physician. (Whatever that means.) They also provide food. (And that is a plus in my book!) I am excited to be able to do this. It is so important for new doctors to know about Rett Syndrome. It is imperative girls get diagnosed early so they can start getting therapy. I firmly believe Amber would be walking if I had known how serious her condition was and pushed her to walk. Amber used to be able to cruise around furniture!

Amber's seizures seem to have improved. I thought they were completely gone, but then she had one Sunday and one today. I still don't know the results of her blood work. I have noticed one of her arms (gosh I can't remember which one) is twitching periodically. Oh joy. Another thing to mention to the doctor.

Amber has been a little moody lately and I'm not quite sure why. It could be the increase in meds or just having gas. Always the guessing game. Sometimes I get sick of this game, but then what other choice do I have.

As always, thanks for visiting. I am continually surprised at who is still seeing what is going on with Amber. Thanks! I said I would say what is going on with the rest of the family, but I guess that will have to wait for another time.

Saturday, July 14, 2007 9:24 AM EST

Amber is one happy girl. She is laughing so much lately and just really responding to us. She tries so hard to communicate with us.

Amber is also having major seizures. She also quits breathing and turns blue at least once a day now. I talked to our doctor's nurse and she did not get our messages. She said the messages were sent to the doctor and not to her. Thursday we had Amber's levels checked, in addition to other tests. Again, the having levels checked tells us how much of the seizure meds are in her. So we have increased one of Amber's seizures meds and will wait for the doctor to tell us what to do next after he receives the results of the tests.

We saw the physical medicine doctor on Thursday. We talked about a number of things. She couldn't believe how well Amber was walking. She suggested we go to a free clinic that is held in Toledo once per month. They have wheelchairs that are controlled by the person's head. She feels Amber would be very good at it. I doubted it very much and after talking to her she made me realize Amber does have very good head and eye control. When she wants something, she moves her head towards it and that would move the wheelchair. Anyway, we will at least try it out.

So other than that, we are continuing to enjoy the summer. I am hoping these seizures can get under control. I don't like it when she stops breathing AT ALL. I used to be ok with it, but for some reason it seems different this time. She just doesn't seem to recover as quickly. I am going to investigate this further with other mothers and maybe the doctors in Texas. It just doesn't seem right to say this is "normal" for a Rett girl.

Maybe next time I will update what the rest of the family is doing. We are busy with baseball tournaments right now.

We won't be going to Kings Island until August now. Karl decided to schedule the baseball party the same weekend without checking our calendar.

Thanks for your guestbook entries!

MEDICATION UPDATE

1 tsp. Senna as needed 1 time per day
3 tsp. Milk of Mag as needed 1 time per day
60 mg. Topamax two times per day (increased from 45 mg. two times per day)
100 mg. Zonegran two times per day
30 mg. Prevacid one time per day as needed (from one time per day consistently)

Wednesday, July 11, 2007 10:36 PM EST

Today was a somewhat eventful day. I opened the mail to find out Amber's Medicaid is completely denied effective August 1 because of our income. ARE THEY NUTS!???? I am hoping and praying someone made some kind of mistake. This happened once before. I just can't believe they think we make too much money for a family of 7. I, of course, made a call, and, of course, our caseworker wasn't in. This weighs heavily on my mind. Amber's meds, Pedia Sure and diapers, not to mention doctor visits, PPC, etc. are quite expensive and there is absolutely no way we can afford it. Her meds alone are over $400 per month. Pedia Sure is approx. $12 for 6 cans and we use 3-4 cans per day. I know everything will be all right, I am just having a little anxiety right now.

Tonight we went to our church's Vacation Bible School. I sat with some moms outside and Amber was in her wheelchair. I look over and Amber is having yet another seizure. (She seems to be having harder and longer ones and each day they are getting worse.) Usually people don't notice, but the other mothers did this time. Then I kindof joke and say she will probably stop breathing now...and she did. Her lips got real purple, then it creeps up to her face and then her eyes roll back in her head and she starts going limp. Quite a sight. I start shaking her, then I get her out of her chair. I am sure I look calm, but I was screaming inside. I kept thinking she is going to breathe and it just didn't seem to be happening! You know how when you are in a crisis situation and you're like making no sense and doing nothing that helps the situation? That was me. Of course, she started breathing, but it was far too long. I have only seen her do that one other time (quit breathing for such a long time) and that time I had called 911. Anyway, I put in a call to our neurologist's nurse once last week and once this week. I just know she hasn't received the messages because she is usually very good about calling back and I haven't heard from her. I am frustrated! So I will be calling tomorrow and have to get aggressive. I wish things didn't always have to be such a challenge. Just return my stinkin phone call!!

Otherwise, Amber is still doing well and is happy. Will keep you posted.

Thanks for signing the guestbook! It is encouraging to read. Do you know I check each and every day to see if anyone has wrote.

UPDATE: Amber has insurance!!!!!!!!!!! (Medicaid) The paperwork states: "We DENIED your Medicaid application". Then if I go to the next page it reads: "We will CONTINUE your HEALTHY START benefits with no change." And then it lists Amber's name with "ineligible" next to it. THEN it states "The following individual is receiving assistance in a different assistance group." OK, so then I look at the next page and it reads "We will continue your MR/DD benefits Waiver Program". A little confusing, huh? No wonder I thought she was denied. Being under a Waiver program covers her. I still want to verify all this, but I am almost positive she has coverage. That whole no insurance thing really freaked me out!

Have a good day! I know I am walking a little lighter today!

Wednesday, July 4, 2007 1015 PM EST

I am finally updating! We have been so busy! But it really has been a fun type of busy. We went camping with a large group from church a few weeks ago. Amber had a blast. She loves sleeping in a tent, sitting by a campfire and all the activity that goes along with camping. We will be going camping again in a few weeks to Kings Island. We get in free because of Make a Wish.



Amber got a new walker. She does extremely well in it. Much better than any other she has ever had. I can't quite figure out why, but she loves it. She is able to move around just a little. It is hard work for her and I know she will get better as time goes on.



Everything Amber does is a slow process, but we have found if we stick with it, she does things we never thought she could. Her walking is continuing to get better and I am confident she will continue to walk as she gets older and I will push her to do it more as I won't be able to lift her quite as easily.



Here is the poster a boy at school bought for Amber. They sent it home with her on the last day of school. We have it up in our dining room at Amber's level so she can look at it when in her chair or walker.



Tori decided to get her haircut the same day Amber did. We sent Tori's hair to Locks of Love for children who lose their hair because of an illness or chemo.



Tori was very happy with her haircut. I was a little more nervous about the whole thing. That was alot of hair she got cut off!



I found a boat at the dollar store that I thought might work for Amber to float around in. It is perfect! I am always looking for things so Amber can participate more. We are able to put water inside the boat where she sits and she floats all around the pool in it.



Amber loves when the kids jump in and she gets splashed and it bounces the boat around.



Amber has been extremely happy this summer. We are doing well with her constipation. We have had it under control for quite awhile now. I believe Amber is starting to have more seizures than usual. The last few days she has stopped breathing quite a bit. Her lips usually turn blue, but then she starts breathing again. I know this is normal for her to do, but she hasn't done it for quite awhile, so why is she starting up now? Amber has an appointment to see a physical medicine doctor next week. Amber goes to Prescribed Pediatric Center (PPC) three days a week now. A college student is working with her and I am very happy about that. They don't tend to do alot with Amber at PPC, but this student wrote me a letter and will be doing things with Amber like they do when she is in public school. Most importantly, she stated she will be walking Amber every where she goes.

I appreciate that many of you have noticed I haven't updated in awhile. Just know that no news is good news. I tend to update more when things aren't going well.

Amber is such a happy girl and seldom cries anymore. We can go for days and days with out a peep out of her. She laughs and giggles and just brings a smile to our face often. We often wonder what is going on in her head to make her giggle and smile so much. If we all could only be so happy. When things are going so well, I find myself thanking God for bringing her into my life. She has changed me so much and made me such a better person.

Happy 4th of July! We are so blessed to live in a country where we are completely and totally free. We don't know how good we have it!

Tuesday, June 5, 2007 10:02 PM EST

Amber is officially out of school for the summer. She got her hair cut....short! Pictures to follow next time.

More on the conference…..


This was the badge I wore. This was very helpful in seeing everyone's child, where they lived and their name.


This is Jan Erickson who makes Amber’s arm splints. I spoke with her quite a few times and was surprised when she said I was her first customer! Her items can be found at www.armbraces.com She also makes these really cool ponchos that have lots of Velcro. She can also make them with a short back so they are not in the way when a child is sitting in a wheelchair.


Kathy Hunter, President of the International Rett Syndrome Assoc. and me. Kathy is a wonderful person who is very approachable. As busy as she is at the conference, she took time out to talk to many people. She was often seen taking pictures of everyone throughout the weekend and always seemed available to talk.


Kristen from Lansing, MI, Mary Beth from Nashville, TN, and me. We hung out together most of the weekend. Kristen and I shared a room. If you can believe it, Mary Beth has an adult daughter with RS!


There was a very special Tribute Dinner on Sunday evening. There was a big meal, silent auction, dancing and other fun stuff going on. I bid on these arm splints and won. We can never have too many arm splints!

The conference was full of many great speakers. I learned a lot about communicating with Amber.

A few of the many things I learned:

The part of the brain that responds to music has not been damaged. That is why music therapy is so valuable. (And explains why Amber can stop mid-cry when we put in a Baby Einstein video.)

Something that was repeated over and over throughout the weekend is that we must believe in our daughers.

On the last day, there was a sibling panel of kids in age from 24-11. They spoke about what it was like to have a sister with RS. That was a very emotional time. EVERYONE was crying. One girl spoke about how her sister is her best friend and was her Maid of Honor in her wedding. The kids spoke of how special their sisters were to them and how they have a special bond that others can’t possibly understand.

If there was one thing I gained from this conference, is that I have hope. Talking with other moms who have experienced what I am going through and much more, gave me hope. I spoke with petite women who are able to still take care of their girls that are over 100 pounds and are unable to walk. This gave me hope. Hope that I can do this and I am not in this alone. Others are experiencing what I experience and more. I feel refreshed and able to take on another year with Amber. I hope to go to all conferences after this. I feel I have made some friendships that will last forever. I treasure the weekend I spent with friends who understand me like no one else can.

Thanks as always for checking on Amber.

Sunday, May 27, 2007 5:41 PM EST

The conference is AWESOME!!! Friday I met Kristen (another Rett mom from Michigan) at the Atlanta airport and we took a taxi to the hotel together. We attended the Keynote Address with Kathy Hunter (founder of IRSA) titled "The Light is On and She is Home". We then went to a mexican restaurant in downtown Atlanta.

On Saturday we got up early and attended various sessions all day. I learned sooooo much and feel so energized to start doing more with Amber. I realize how very LITTLE I have expected and done with Amber. I have so many ideas to try with her and can't wait to get started. The speakers stress that we should always assume Amber understands. I will be working with Amber to teach her to read. It really is possible!!!

It has been great meeting other moms. I have to say I have been a little homesick, but I am doing better than I thought. I definitely am ready to go home tomorrow evening.

I will post pictures next time. Tonight we are going to the Tribute Dinner which is a big event. There will be lots of things going on--an auction, dancing and good food.

There are moms here from all over. There are some from Costa Rica and even Israel! I'm not sure how many are attending, but I would guess about 400??

Will write more soon!

Monday, May 21, 2007 8:31 PM EST

Only a few more days until the IRSA conference! I don't really have time to get excited. I am definitely feeling funny knowing I am leaving my family for four whole days!

Amber stayed home from school today. She has a bad cold and is miserable. She doesn't do sickness well. She whined and/or cried all day. I hope she will be in a better mood tomorrow.

Since last week Amber has been gagging at least a couple times a day. All of a sudden she will just start choking. It is really strange and I have no idea what is going on.

Amber got her new walker! It is still at school. I will post a picture once we get it home this summer. She does EXCELLENT in it and is able to move around just a little bit. With practice she should be able to walk in it.

Will write about the conference next time!

MEDICATION UPDATE: Increased Topamax to 45 mgs. 2 times per day starting 5/17/97

Saturday, May 12, 2007 7:43 AM EST

When we went to Give Kids the World, one of the gifts we received was a book telling of Henri Landwirth's story. It was his biography. He is the man who came up with the brilliant idea to have such a place for children. This man went through some HORRIBLE times. He lived as a Jew in Germany during the Holocaust. I can't begin to tell you how awful things were for him. We have all read about the Holocaust, but this book touched me like nothing else. He took what he went through and made something good come out of it. He lost his entire family, except for his sister. He went through terrible times of being starving and cold for years!!!! Can you imagine? The last time he was able to see his mother was through a fence. He couldn't yell out to her because he knew she would cause a commotion and would be shot. This was the last time he ever saw his mother! He was separated from his sister, but after the war had heard she might be in another town. He traveled six weeks on foot to find her. When he arrived at the house they said there was no one there by her name. He sat down and cried. He was crushed. So then he whistled to her in their secret whistle that only they knew. And she whistled back!!!! And out she came running!

Anyway, he made it over to the United States and became a very wealthy man by managing and then later owning hotels and he created Give Kids the World. It was a dream of his. It was so neat to read about what Give Kids the World does for kids and I was able to remember all of the things he told about the place because we've been there! He believes God had a special purpose for him and allowed him to live through all that to help others. God took something really bad and made good come out of it. And the Bible tells us he will do just that.

And isn't that the way it is with Amber. Somehow God has taken something really bad that has happened to Amber and made good come out of it. She has helped mold our personalities to become different than who we were five years ago. Our family has changed for the better because of her, whether we like what has happened or not.

Amber is continuing to do well. She has her moments and it is a constant guessing game, but for the most part, she is happy. Her teacher is really really pushing her to walk. She makes her walk for everything! I don't think she carries her or puts her in her wheelchair any more. What dedication! It takes time and patience.

Yesterday Amber had three seizures. Otherwise, I thought they were going away. My back/shoulder still hurts terribly. I am taking muscle relaxers and they seem to help so I think the pain is slowly going away.

Please sign the guestbook if you haven't in awhile. I really enjoy seeing who is still reading.

Wednesday, May 9, 2007 8:24 AM EST

Amber has been sick for a couple days. She had a cold and it really makes her cranky. She also has lots of air in her belly lately. Sleeping and watching her videos seem to comfort her the most. She was able to go outside a little yesterday. She really enjoys the outdoors. She missed a day of school, but is back today.

The new Rett Syndrome Handbook finally came in the mail. I ordered it almost a year ago! It is AWESOME! Full of information. It is over 600 pages. I have started reading and highlighting it. So far I have found Amber's picture on two different pages!!! There are even cards in the back of the book to take to doctors or to the library so they can order a copy. I will definitely be pursuing that with our local library! This book should be there! One thing I found in the book that I guess I didn't realize is: Researchers now agree that RS is a developmental disorder and NOT a degnerative disorder with continuous downward progression as once thought. Girls learn throughout their lives. This is good and bad news. Good news for us that Amber won't continue to get worse but can improve and learn as the years go on. The bad news is if the insurance companies get wind of this, they can think she will just get better as time goes on. You know how insurance companies think! This could be major.

Well I pulled a muscle in my shoulder/back. I think from lifting Amber the wrong way. It is very painful. Hopefully this will go away after a couple days. It's like having a stiff neck in my back.

Isn't this weather great? I am so looking forward to summer. I plan on purchasing a seat for Amber that hangs on the side of the pool. I have had my eye on it for over a year. I have tried so many different things and nothing seems to work. Amber LOVES the water and I want her to be able to be in the pool with her brother and sisters, without someone having to hold her constantly.

Amber's last day of school is May 31. She will then attend her day care. I haven't decided how often yet. They do not do near as much with Amber and I am hoping she doesn't lose skills this summer.

Thanks for checking in!

Saturday, April 28, 2007 12:15 AM EST

Amber is really doing well. She is very happy. Sometimes she will have these laughing spells that are so funny! We have made some big changes to her medications. Tuesday was an awful day for her. She cried all day long. I was ready to put her back on a med, but we stuck it out and she was better by the next day.

We saw the neurologist on Tuesday, in addition to her Pediatrician. We have raised one seizure medication considerably. He wasn't ready to lower her other seizures medication yet until we make sure this one works. She may be getting a 3 day video EEG at a later date if we can't get the seizures under control.

We then went on to the Pediatrician because Amber had a horrible diaper rash. It was like one big blister on her butt. I've never seen anything like it. They cultured the blister and Amber has MRSA (Methicillin Resistant Staph Aureus). I have thought this for a very long time, but nothing was ever cultured. Anyway, the little pimples and boils she occasionally gets are a type of Staph infection. We have guidelines to treat this and right now she is on antibiotics and the butt is looking better!

On Monday, Amber's Physical Therapist came to me and said she looks like she is getting scoliosis! This is after we just saw the doctors in Chicago two days before and they said her back was fine!!!!!!!! Who do I believe??? I tend to believe the doctors. At any rate, I should probably get her into our Physical Medicine doctor at some point to have it checked out. I'm not too concerned since I have faith in our doctors.

I am going to start keeping a record on this blog on what exactly I am doing with Amber's medications. I should have done this a long time ago. Now that she is in a study, they want to know EXACTLY what is going on and I am not keeping track of things very well!

Thanks for stopping by again!

MEDICATION NOTE TO MOM: Stopped-- Miralax 4/21; Starting 4/22--Increase Senna 1-4 tsp. 1 time a day, Continue Prevacid 30 mg 1 time a day, Starting 4/25--Increased Topamax from 15 mg 2 times a day to 30 mg 2 times a day; Continuing Zonegran 100 mg 2 times a day.

Sunday, April 22, 2007 10:50 AM EST

Our Chicago trip was great! At the last minute, we decided to go by train. Just Tori, Amber and I went. It was fun!



We started out with a 1 1/2 hour delay. So the girls watched a movie at the train station. Next time I will check the schedule before leaving home!



Amber was very excited riding on the train, but soon fell asleep for most of the ride. It should have been a 4 1/2 hour ride, but from start to finish, with delays it was about 7 hours.



Tori fell asleep too!



We arrived at Union Station and then found our way up to street level and caught a taxi to our hotel. We then went walking and found a really good Italian Restaurant to eat dinner. Then we took the subway further into Chicago and did some sightseeing and then rode it back. Our hotel was about 1/2 mile from the subway. It was quite an experience seeing the different types of people! Amber LOVED all the noise and commotion.



Amber loved sharing her bed with Tori and was very excited when it was bedtime.

The next morning (yesterday) our appt. was at 7am. We went down to the lobby and many of the doctors were there waiting to walk to Rush University together. They invited us to come since we didn't know where we were going. They made a joke that we couldn't get started without them anyway! We got to ride the elevator with Dr. Glaze. He is like a famous person to us!!

We were done with our appointments by 9:30. We walked back to our hotel and hung out, then went back to Rush for a luncheon and panel discussion with the doctors. It was great to be in a room with so many other families going through the same thing as us. There were a total of 71 families going to the clinic this weekend!!



During the panel discussion, families were able to submit questions and the doctors would answer. Here is a picture of four of the five doctors. These are THE top doctors in Rett Syndrome in the world. That is how they introduced them. They were from Texas, Alabama and South Carolina.

Our appointments went extremely well. If I hadn't mentioned this before, these appointments were to collect data for the International Rett Syndrome Assoc. Clinics Research Program/Natural History Study. We will attend this clinic two times per year. This clinic is to collect data on Amber. They ask questions anywhere from how I handle having a daughter with RS on down to Amber's birth weight. In the meantime, I am free to ask any questions and the doctors examine Amber and give their recommendations. This is a totally free appointment to collect data. I learned so much. We are going to make some drastic changes in Amber's constipation and seizure medications. The doctors wrote down their recommendations and I will take this information back to our doctors here in Toledo. They were unable to prescribe or actually "do" anything as this was an appointment to collect data and the clinic is funded for research. Hope this makes sense.

Anyway, I have already made changes to her constipation meds and on Tuesday we see our neurologist here and can discuss what we will do about the seizure meds.

Some things I learned:

Amber's teeth grinding should subside when her adult teeth come in. Dr. Glaze said this is what he has seen in most of his patients. This is great news!

Rett Syndrome really is not a form of autism in any way at all, but the medical community still shows it on the autism spectrum. This is good and bad. Sometimes girls with RS are able to get services because they supposedly have a form of autism and sometimes they are not for the same reason. The doctors say do whatever works for you to get what you need for your daughter.

The doctors discussed the mouse models where they were able to reverse the effects of RS. They said it is an important discovery, but that we are a very long way from this working in humans.

They said watching our daughter's weight gain and growth VERY CLOSELY is imperative in her thriving in all aspects of life. They are basing this on what they have been through with adult women with RS. They are very in favor of a g-tube whenever in doubt. They say they see it over and over that the girls thrive in all areas after getting the g-tube. They are happier, are more functional and more alert. This is because they are getting their nutrition! Duh! The problem is, many families drag their feet on this, because it is such a major decision. (And we were one of them!)

Amber's back looks great and no scoliosis so far. (This is a big problem in our girls.)

At this time there is no need to get a DXA scan for bone density. Girls with RS are at high risk for brittle bones and fractures. Amber is NOT getting enough calcium so I have to make some changes in her diet to make sure she does.

At the next clinic, the doctors would like us to get our doctors from home to come also. They will be sending out literature to invite them to come.

Our family needs to learn CPR.

So that's all of it in a nutshell. Our next appt. is 11/3. We will be going by train again. On our train ride home last night, we were able to be in a VERY quiet car with only two other men! That's it! The rest of the train was packed! The girls were each able to get two seats to sleep on. We arrived in Toledo at 2:30am. The train had many delays, again.

Friday, April 13, 2007 7:37 AM EST

Amber is still doing fabulous. She is the happiest person around. She is really enjoying life. Amber is much happier than any of us. She really is! The simple things bring her great joy. She loves kisses and books and her favorite videos. She has favorite toys and loves to go for car rides and school and shopping carts. What a simple wonderful life. I thank God often for bringing her into my life. I would never, ever, choose this, but I see so much good that has come out of our journey. Amber has changed our whole family for the better. She touches each one of us in a different way. I try to keep my thoughts positive and not worry about the future. I try not to feel sorry for myself when I think about carrying a diaper bag and changing diapers for the rest of her life.

This week I picked her up at PPC. She had Spring Break and went to her special needs day care a few days. I stood her up to put her coat on. There was a table that was just her height. I stood her up to it and let go! She stood there a very long time and kept her balance! I don't think she realized I wasn't holding on. Her legs are getting stronger and stronger. I hope to write in this journal one day that she took a few steps by herself!

Yesterday I booked my flight to go to the Rett Syndrome conference in Atlanta, Georgia, over Memorial Day weekend. I will be going all by myself!! No kids, no husband!!! This will be a first for me. I am really excited to go. (Imagine that!) The theme is "Reach Me, Teach Me". All the top doctors will be there. Some of the seminars are titled "The Light is On and She's Home" and "Reach Me...and Teach Me to Read". So I am really excited to learn some things that will help Amber. I am able to get most of my trip paid for through some funding provided to Amber. I will be staying with another mom from Michigan. I met her at the last conference I went to a few years ago.

I THINK Amber's seizures are getting better. She still has them, but they are not as intense.

Thanks for checking on Amber. Please sign the guestbook if you haven't in awhile.

Sunday, April 8, 2007 9:07 PM EST

I ordered a new book from the Rett Syndrome Assoc. It is called Raindrops and Sunshine. It's kind of like a coffee table type book. It's a bunch of things parents have said about their daughters that have RS. I have only read a few pages, but I found right in the beginning an excerpt of something I wrote!! A couple years ago, when Kathy Hunter was compiling the book, she asked for input to certain questions and I responded to a few. Here is what I wrote. It is found on Page 8.

"My daughter is three years old and was diagnosed when she was eighteen months. I never asked why. I was sad for her more than anything. I thought about all the things she would be unable to do. I pictured her sitting around craving to be like everyone else, wanting to have a boyfriend, wanting to drive. I now know that isn't the way it is going to be. She is not of our world. The things we overlook give her great joy. She thinks riding in a shopping cart at the grocery store is the best. She enjoys sitting between her brother and Dad while they play Nintendo. She gets her own controller and she thinks she is playing, too! We include her in everything we do. We just make adaptations. Whether it is swimming, bike riding, boating, sledding or swinging, she is also doing what we are doing, just in a different way. And she's OK with that. She doesn't know it any other way.

She attends preschool wtih typical kids and she loves it. She has lots of friends. Kids seem to love being around her. We find the kids are usually fighting over who gets to sit next to her or help her! She gets lots of hugs and kisses and we talk to her as if she is completely and totally like us. And we are beginning to realize she understands more than we thought. She seems to know exactly what is going on and is able to make choices. The possibilities are endless for the future! She knows what is really important in life. We have met so many people because of her. She is quite a challenge, and I wouldn't have chosen this, but we don't know her any other way. I know she is going to lead a happy and fulfilling life because we are going to make it happen for her. We are going to give her lots of love and action. We will adapt all situations so that she can be included. We feel so blessed to have such a special person in our lives."

Amber is still having seizures daily, but has been extremely happy. I get reports from school that she has one to two seizures daily, sometimes lasting four minutes. Sometimes staring, sometimes full body shaking. Oh, and don't let me forget she sometimes quits breathing and turns blue/purple. I am confused. I have been reading about other families dealing with this (from my internet support group) and I have to wonder when a seizure is a seizure and when is it not. Girls with RS shake and tremble as the norm. Often times Amber can have what I think is a seizure and no one else even notices. So here we are giving her two medications and these "seizures" are still going on. I think it is time for an over-night EEG. UGGHHHH!!! I don't even want to suggest it, but I am thinking it is a must. Sometimes I think far too much about this. Seeing the doctors in Chicago (our doctors from Texas) won't be soon enough for me. They need to see her and make some recommendations. It is wonderful that we are seeing our neurologist here in town days after we get back from Chicago. It is easy to over-look these seizures since Amber is doing so well otherwise, but seizures just aren't good!

I hope you all had a blessed Easter.

Wednesday, March 28, 2007 8:02 PM EST

Amber has ringworm. It is near her right arm pit. So she is home from school a couple days. We didn't even take her to the doctors. They just told us to put a medication on it. She will go back to school on Friday if it looks ok. It is supposedly very contagious. It just looks like a dry patch of skin.

Amber is extremely happy. Finally! She is always smiling the last couple days. Even when no one is around, she smiles. We got the whole poop thing under control again. It is sooooo nice to have her smiling all the time.

She is still having seizures. Sometimes we go for days without them, but the last few days she has had quite a few. It seems like the more seizures she has, the happier she is.

Nothing else going on!

Friday, March 23, 2007 9:17 PM EST

I wish I could say Amber is doing great. She changes from hour to hour. Right now she has another cold. I think her main problem lately is having severe gas pains. Today started out rough, but ended up being a good day.

At school Amber is walked down to the lunch room each day. There is a poster of two dogs reading a book on the hallway wall. Her teacher says they always stop to look at it. This week a 5th grade boy bought her a poster at the school book fair. It was a poster of two puppies!!!! Her teachers said the boy has helped just a few times in gym class and were really quite surprised he did this. How neat!! I just wonder how many kids Amber has for friends and how many lives she touches. What made a boy do this for her? It just touches me beyond words.

Nothing else going on. I am very frustrated with the crying we deal with each day. Usually once we get her bowels taken care of, everything is better. I don't know why we are having these problems again. Hopefully our doctor appt. next month will help. It just doesn't seem right that we can't get things under control after all this time.

Tuesday, March 13, 2007 6:50 AM EST

And just when I thought everything was going fine....Amber has been crying quite a bit lately. It all started on Saturday. Is it the new medicine? I have a call into the doctor to see what their thoughts are. Something we have found is when she cries, we give her something to eat and she usually stops. So maybe she is just wanting to eat more. Something else I have noticed, her body seems to be very "tight". When I lay her down to change a diaper, she is always curled in a fetal position. It it is hard to straighten her legs out. Also, when I carry her, many times she won't straighten out her legs. So that is what is going on now. I feel like we can only go for a few weeks of smooth sailing and then something has to pop up that we have to deal with. It is really quite stressful when she cries. It is a hard cry and I am always so afraid she is in pain. When she is happy, she is very happy, but then all of a sudden she will start crying. Right now, food is the answer! Isn't that the case for alot of us? ha ha

Friday, March 9, 2007 6:20 PM EST

Howdy everyone! Amber is doing well and back to school. She missed 6 days because of being sick! It is going around her whole classroom! She is so happy to be back. She really gets into it. It is so neat when I walk in and see her sitting in a chair doing school work with an aide. Lately Amber is REALLY trying to talk. She tries so hard to pronounce her words. I think if we tried harder, we might actually make out what she is saying. She says "MOM" all the time now. And many times we think she says yes when we ask her a question.

This morning I showed Amber's teachers some of our Disney pictures. I started getting choked up! I think I will always have such fond memories of our trip that I will always get weepy talking about it!

Amber's seizures are better. She is now on two medications. The new one seems to be working.

Next month we are going to Chicago for an appointment with our doctor from Texas. He travels around the country doing "Rett Clinics". This will be much easier than traveling to Texas!! Chicago is about a 4 hour drive for us.

That's all for now. Please sign the guest book if it has been awhile. Are you people still reading my ramblings?

Wednesday, February 28, 2007 7:13 PM EST

Just wanted to update that Amber is still sick! She is slowly getting better, but it is a long process. She has a cough and cold. She is on antibiotics and she gets regular breathing treatments. The breathing treatments make her extremely happy. The treatments must really help her breathe. She actually puts her face right into the mask so she can breathe in the medicine. She knows it makes her feel better. She hasn't been to school all week. I am hoping maybe she can go on Friday, but probably not. She doesn't have alot of energy.

We have reduced her seizure medicine and I really haven't seen many seizures at all. Also, we started her on the new seizure medicine.

Thanks for checking on Amber!

Friday, February 23, 2007 1:51 PM EST

Amber's teacher called yesterday and said she was very lethargic and was acting funny. She could hardly hold her head up. So I called the doctor and her levels had just come back. They usually are at 50, but came back this time at 104!!!!!! So she obviously was feeling very drugged. We have reduced her medication for now and are waiting for a call back from the doctor. In the meantime, Amber has a 102 temp and is sleeping lots.

We went to the Make a Wish sports auction. It was a great time. They had showed on the big screens some very moving stories about some kids who had their wishes granted. Amber slept most of the time and probably shouldn't have been out, but we didn't want to miss such an important event if at all possible. One of this year's wish kids spoke about his illness and I was struck by how much he spoke about the Lord being in his life. Also, the prayer before dinner was just great. We also prayed for the family of a Toledo police officer that was shot and killed this week. We were assigned tables. We sat with two other wish families. One family had just lost their daughter in November! She was 19 years old and it was very unexpected. She died in her sleep. She had led a somewhat normal life and had graduated from high school. Most of the tumor had been removed when she was five years old. Make a Wish gave us a framed poster of Amber and the other wish kids. It is awesome looking and hanging in our living room. The auction was much more fun than we had thought and we are glad we were a part of it. Make a Wish is a wonerful organization.

Hopefully Amber will feel better soon. She is very white and seems very sick.

Sunday, February 18, 2007 6:10 PM EST

Amber is sleeping like crazy! A couple days she has slept the entire day! I really have no clue what is going on. She is very happy, but just sleeps alot. She seems to have less and less seizures the more she sleeps. We saw the doctor on Monday and he prescribed Topomax, in addition to the Zonegran she already takes. I haven't started her on it yet since I am definitely not seeing many seizures.

We saw a Make a Wish billboard today. It really is not in a good spot and you definitely can't tell Amber is on it. But it is still neat to see. I took a picture of it. We go to the sports auction on Thursday!

Here are some more pics of Disney.


This was at MGM Studios on our second day. We were still able to see Mickey a few more times during our Disney trip.


Amber was able to ride the carousel each morning at Give Kids the World. Her and Mariah loved it.


Goofy and Donald Duck took time out for us in front of the castle.


We were able to feed and pet the dolphins at Sea World. Amber loved touching them. There was an extremely long line to get in to feed the dolphins. We were able to go right in. We would have never waited in that line.

I have had people ask me if Amber really knew what was going on while at Disney! YES!!! She loved it. She loved the characters. In almost all the pictures she would never look at the camera because she was too busy trying to figure out these goofy looking things standing next to her. She would usually start smiling as we walked away from them. It was a delayed reaction! As we were walking from the van towards Epcot, Amber got extremely excited. We got it on the camcorder. She was shrieking and laughing. She knew we were going for another fun day!

Sunday, February 11, 2007 2:35 PM EST

I just had to update with some exciting news. The Rett Syndrome Research Foundation (RSRF) announced results of a landmark study reversing the symptoms of Rett Syndrome (RTT) in a genetic mouse model. The findings, by Adrian Bird, Ph.D., of the University of Edinburgh and Chairman of the RSRF Scientific Advisory Board, appeared online in Science Express on February 8, 2007.

I have been trying to read the various articles. One article reads:

"The condition was thought to be irreversible, but researchers at Edinburgh and Glasgow universities, who studied it in mice, found switching on a particular gene appeared to result in a complete recovery."

Another reads:

"Researchers reported yesterday that when they reversed the genetic defect involved in Rett Syndrome, they brought on a stunning recovery in mice just days from death: irregular breathing returned to normal and mobility was restored. Brain activity, too, appeared to improve and tremors abated.

Scientists caution that it is a long way from mice to humans, that the experiments must be replicated by others, and that the genetic manipulation that restored the brains of the mice is not currently feasible in people.

But they also point out that the new findings raise hope not only for people with Rett, but for those with autism and other "developmental" brain diseases that strike after birth, because the dramatic recovery of the mice suggests that the brain is far more fixable than many have thought"

Is this exciting or what! I am not so naive to think that we are home free, but it is amazing the advances that have happened in regards to RS. Every year we hear of new advances, but this one is BIG BIG BIG!

I can't help but remember Amber was completely normal at one time as a baby. Then she lost her skills. So it does make me hopeful that she can get those skills back some day. If not her, other girls in the future. I really believe there will be more findings in thecoming years.

Will tell more about our Disney trip next time!

Friday, February 9, 2007 9:17 PM EST

Our trip to Disney was FABULOUS. Words can't describe how much fun we had. There were so many special moments that I will cherish forever. It is hard for me to write this. I have a lump in my throat and tears in my eyes. Everything was that special. I cried the day we left Give Kids The World. As we were checking out, I couldn't help thinking that we would never, ever, stay there again. This was a once in a life time trip and the fun was over. We only have memories of this wonderful time. We are welcome to visit there and I know we will. We just can't actually stay there in a villa.

Well, there are so many pictures I would love to post, but here are just a few. I took 14 rolls of film, about 30 digital pictures and I have a disk of our entire Disney professional pictures that were taken at the different parks.



This is the Gingerbread house where we ate breakfast and sometimes dinner. Most of the workers there were volunteers and were elderly retired folks. They were so friendly and some very funny. The tables and chairs in this restaurant were a smaller version for the kids, but still very comfortable for adults. Food here was all you can eat!!


Here is the entrance to Amberville. This is where the kids could play miniature golf, remote control boats, pool, video games and there was a HUGE miniature train set that went all around an entire room and overhead. There were even buttons kids could push to make certain parts of the city or train do certain things. A very cool place and quite the hang out for all kids.

Here is a larger view of Amberville.


Here is the entrance to the theatre. Movies were shown here on some nights. Karl and Jay were able to watch the superbowl on the big screen. Popcorn and candy was provided at the theatre. And it was the real popcorn and butter you get at the theatres. Yum!


Here Amber is with Jimmy Neutron at the Castle of Dreams at Give Kids the World. Most mornings there were characters we could meet. Another morning we met up with Barney, Baby Bop & BJ. On another morning we got to visit with Goofy, Mary Poppins & Pluto. We also got a special visit and photo session with Mickey Mouse. They are sending us that picture.


Each morning and evening the carousel was open. Mariah and Amber rode this faithfully every morning after breakfast. Amber was able to ride in the snail in her wheelchair. She loved it!




Here is Amber meeting Jo Jo from Jo Jo's Circus. When meeting the characters, she usually had a bewildered look on her face and was usually trying to figure them out. Her smiles usually came afterwards. It was quite funny to see her reactions.


We usually all posed for a picture with each of the characters we met.


At the Castle of Miracles at Give Kids the World, Amber received a star. We wrote her name on it.

The star was then placed on the special chest and Amber was to make a wish. The Star Fairy would then take her wish along a path (we actually watched a path of lights go up to the ceiling and around the castle.) Amber was to come back the next day to find where the Star Fairy placed her special star in the Give Kids The World Castle of Miracles' sky!


Amber actually has her star up in Section 4B, Row 28, Star 13. We found it the next day! I can't tell you how it felt to view her star up there among all the others. There are thousands on the ceiling in the castle. It was quite a special moment.

There were so many special moments for us. When we went to Magic Kingdom, we stopped in at the castle to see if we could eat there. This is a hot spot for people to eat and normally has to be booked at least 90 days in advance. No joke! So we asked in the morning and they said no way, no cancellations. We were passing by Cinderella's castle on our way to lunch and took a chance once again and they gave us a table!!! The man at the desk told me that because we had our special button (Make a Wish) that we could get in any time. I was so excited! So we got to eat in Cinderella's castle. Snow White, Cinderella, Belle and the fairy godmother all visited our table.

When we were at Sea World, we got free fish to feed the dolphins. Amber and all the kids were able to actually touch the dolphins. Amber loved it. She was all smiles.

There were so many more special moments I could tell. I feel very weepy thinking about our wonderful trip. It was a dream.

And now we are back to reality and it has been very hard on all of us. Mariah actually cried the morning I said we were coming home. She didn't want to leave. Our last day in Florida was rough on Amber. We had been going non-stop and she wasn't even taking naps. She did awesome. So by the last day, she was having seizures like crazy. She would stop breathing and turn blue with each one. It was quite frightening. The day after we got home we kept her home from school and she slept the entire day. She is doing much better now with the seizures. She didn't even have one today. She has a doctor's appt. on Monday and we have also called and talked to our doctor here and the one in Texas. They both said to use my instincts and call 911 if need be, but that girls with RS do stop breathing sometimes with seizures. This doesn't mean it is ok, but it does happen. I tell ya, that last day in Florida, we were quite worried. I think the over-stimulation and no sleep really caught up with her. She had so much fun and laughed alot. She enjoyed the characters more than anything else. We also took her on rides and she really enjoyed the ones with lots of lights and music. But the lights going on and off also seemed to trigger seizures.

I will try to update with more pictures and more stories very soon. Thanks everyone for checking on Amber.

Sunday, January 28, 2007 10:17 PM EST

We went to the sorority house today. It was totally awesome. When we got there, they had us walk through the house and girls were lined up on both sides and were blowing bubbles!! Amber loved it. She was all smiles. We sat down and were surrounded by about 50 girls. Then they started giving present after present to the kids and Amber. It was all so overwhelming! We still feel like we are in a dream. When we got home, we put all the presents in a pile.

I couldn't even fit all the presents in this picture. There were many more.

Words cannot express how grateful we are to all the girls. It was quite obvious how much time and effort they put into the gifts and the decorating. There were personalized gifts like Mickey Mouse with a t-shirt that said "I LOVE AMBER" or a picture frame that someone personalized, to an autograph book that someone also personalized to a personalized bag that says "Chi Omega loves me" with Amber's name on it. There was SO much stuff. Night gowns, a Build-a-Bear, Disney pens, Disney cups, Micky Mouse hats, a Doodle Bear with a bunch of the girls names on it, a portable DVD player.....I could go on and on. We even got gift cards. Thank you just doesn't seem sufficient to say to these girls. But THANK YOU anyway. We noticed all the little personal touches. It means so much to us. Well, now on to some pictures!


Mickey Mouse came to visit!





Amber and Amy, our Make-a-Wish coordinator!


Amy, Mickey and our family


Tori and Mariah were blowing bubbles with the girls.


Say cheese!


Mariah stood on a chair and sang the Cinderella song for everyone! She was absolutely loving all the attention!


Mariah with some of her gifts.




Amber hanging out with some of the girls.

We wish we could have thanked each one of the girls individually. Just know that we are so grateful and will never forget your kindness!

Chi Omega Rocks!

Please sign the guestbook! We would love to see who has visited!

Saturday, January 27, 2007 9:29 AM EST

A couple weeks ago we went to a place called Monkey Jump. The kids loved it!




Hayley and Amber going down the slide.



Tori and Amber

Well, it's almost time! We are so excited! I think I might have mentioned that before. Ha! There is so much to do and we have just been so busy.

Yesterday Make a Wish came out and gave us our plane tickets, our check for spending money, our Make a Wish badges and all kinds of information. Then at 5:30 we went to the Make a Wish office for Amber's autograph signing. The posters are for their corporate sponsors. We had about 50 posters to sign (I think). I started out helping Amber and then decided that was too time-consuming. So then I started signing her name myself. Well she didn't like that at all. So I had to help her again, then sneak a few in on my own so we weren't there all night. The poster is AWESOME! I will be getting a framed copy of it and then will post it here. Amber and four other kids are on it. ALSO, the poster will be on four different billboards around town starting next week!!!!!!!!!!!!!!! I immediately got a lump in my throat and got teary eyed when I heard that. I think I am going to be a crying mess the whole Disney trip because so many moments like that will be happening. Also, I found out to go to the sports auction it is $150 per ticket. Wow! So I am excited to go to that too.

On Sunday we are going to the sorority house for the party they are having in honor of Amber. I hear they are very excited for us to come. That should be fun too.

Amber is doing fabulous. She is completely off her newest seizure medicine. That was the culprit for her unhappiness. She still is taking one other medicine for seizures. They have returned a little more, but so far it is not too bad. We have a doctor's appointment as soon as we get back from Disney. She laughs and smiles and is back to her old self. So we are definitely ready for Disney!

Thanks for checking in!

Friday, January 19, 2007 10:49 PM EST

Amber has been having a rough week. If I were totally honest, I suppose she has been having a rough month. I keep saying she is usually happy and only has a few bad days, but lately it does seem to be getting worse. School has been telling me she cries often during the day. What is strange is she seems to snap out of it and is happy. And then suddenly she can cry again. So today I took her to the doctor. I was certain she had an ear infection. Nope. So then I called the neurologist and asked about side effects of her new med. Well, we think that is the problem. It has definitely helped with the seizures (although she had one on Saturday and one today). One of the side effects can be aggressive behavior. Bingo! That is Amber. I don't know why I haven't noticed it sooner. Hello! She has fallen off the couch twice in an effort to get up and go! I was able to look back through her notebook her teacher writes in and she has really had some off days in the last month. Also, it seems like on the weekends she is very unhappy. I would always figure it was because she wanted to be back in school. But it hasn't always been like this! So we are lowering her dosage and hoping this will help. I wish we could just get her off the stupid med and try something else, but that's not what we are doing yet. I am just a little paranoid she isn't going to be happy at Disney World. I'll take the seizures over her crankiness any day! Probably not the right thing to say, but that's how I feel right now.

SO that's it for now. Hoping she will do better very soon. She deserves to be happy. I don't know what that med is making her feel like. It makes me sad. When I put her to bed tonight, she just looked at me while I said prayers. I talked to her and she just seemed so "normal" like she was hanging on every word I said. Sometimes my heart aches for what she has to go through and has to be at the mercy of everyone else to figure things out for her. I read on someone else's website something that really touched me. It read something like this:

“In my mind, I have to be immortal because I have to always be here on Earth to take care of my precious child. Taking care of her is difficult, but it is never a burden. I am her eyes, ears and voice. She is my best friend, and I have dedicated my life to providing joy and comfort to her. To my last breath, everything I will ever do will be for her or because of her. I cannot adequately put into words the amount of love and devotion I have for my child."

Saturday, January 13, 2007 87:50 AM EST

Hi Everyone! Disney is almost here and we are very excited! We haven't heard from Make-a-Wish for awhile. We are assuming they will be coming out in the next week to actually grant Amber's Disney wish. This is when we will get more info. We did get our flight changed to leave at 7am so we will be able to enjoy that day in Florida. We were going to arrive towards late afternoon and that just seemed so late! So the limo will be picking us up at 4:30am. Also, Grandma Bonnie is coming for a few days of the trip. She didn't want to miss out on all the fun! We did find out that our stay at Disney is only a 3 day pass. The other days are for Sea World and Universal Studios.

Amber went to the photo shoot. OF COURSE, she had a bad day and was crying the entire morning. I was so upset. She really does have good days, but it always seems like when I really need her to be happy, she isn't. Anyway, I put her in the van (crying) and headed for the photo shoot. She fell asleep. I prayed and prayed that we would get through this. She did fine! She wasn't happy happy, but she did crack a couple smiles. So I can't wait to see the results. She wore a Pittsburgh Steelers jersey for the pics.

I haven't heard any more about that sorority doing a party for Amber.

I think the seizures are going away somewhat. We still see them once in awhile, but they have definitely decreased.

In the last month Amber has fallen off the couch twice and bruised her face. We are trying to be very careful with her, but she is trying real hard to be on the move. She works her way to the edge of the couch, so we have started putting pillows down and watching her closely.

Amber will be going bowling with her class this month. I am sure she will enjoy that.

Well, I got a job! It kindof fell in my lap. It is VERY flexible and just perfect. My first time working in 12 years! So far everything is going well and the house is still standing when I get home. Daddy has really been helping out and has had to pick Amber up from school a few times. It has actually been beneficial for the whole family to have mom gone a little bit.

Amber is continuing to do so well walking. I still can't believe how well she is doing. As crazy as this sounds, I think it will get easier the taller she gets. Then we won't have to bend over to "walk her". And we will probably do it more.



Amber on Christmas Day opening presents.



Amber hanging out with Aunt Terri.

19 days until Disney! (and counting!)

Friday, December 29, 2006 1:14 PM EST

Hope everyone had a nice Christmas. Ours was great. Amber would get very excited and then need to lay down for awhile. She could only last with all the excitement for about 45 minutes. So that is how the day went. She took naps throughout.

Amber is still having seizures. She has been on the new medicine for almost two weeks. She also has a bad diaper rash and it seems to be creeping up on her stomach. If it doesn't get better this weekend, she may have to go to the doctor.

Earlier this week we were at a store and a woman came up and asked if Amber had Rett Syndrome. Then she told me she had an 18 year old with RS. We talked for quite awhile and even have since talked on the phone. Her daughter is able to walk, but has scoliosis really bad. It is always nice to talk to someone who has/is going through the same thing as us. Her daughter can even feed herself.

Speaking of walking, Amber went to PPC (her day care) all week since school is out. They haven't seen her since summer. We showed them how well she can walk with assistance. Everyone stood around clapping as Amber showed how she can walk. It was quite a sight. Amber was kicking up her legs and trying real hard. The last time these people saw Amber, she couldn't even hardly bear weight on her legs. I am hoping to get Amber back into horseback riding once we get back from Disney.

Make a Wish called and asked if Amber would be one of their Star Wish Kids for their largest fundraiser of the year!!! It is the All-Star Celebrity Sports Auction! She will be going to a photo shoot next Wednesday and will be on all their event posters, tickets and program. After they receive the printed materials, they will have a special pizza party/autograph signing. Also, we get to attend the auction as their special guest. They said they have a very special task for Amber that night, but won't tell what!!! The guest speaker is Rocky Bleier who used to play for the Pittsburgh Steelers! So we are excited for all this in addition to our upcoming Disney trip. I just have to say Make a Wish is great!!

Hope you all have a great New Year! We are staying home this year.

Friday, December 15, 2006 12:35 AM EST

Talked to the nurse in Texas today. I called and she actually answered the phone. I had the EEG report within two minutes via fax. Wow! Amber will be starting Keppra tomorrow. Let's hope it does the job. I am always nervous starting her out on a new medicine. We just never know how she is going to react.

Make a Wish called today with our plane reservation times. We will be leaving 2/1 at 1:35pm and coming home 2/7 at 6pm.

Here is a picture of Amber and her class.



Amber eats lunch with all the other typical kids in the school in the lunch room. Mrs. Lach told me they put kids names in a bowl if they have been extra good during lunch. (This is for the whole school). Then each week they pull a name out and that child gets a candy bar. Well, Amber's name was called on Monday. I guess Amber whipped her head around when her name was called and got VERY excited. Mrs. Lach said it was so cool to see Amber get excited when her name was called.

Yesterday Amber's class went to the dollar store to pick out a gift for their gift exchange. Then they all went to McDonalds. Mrs. Lach made Amber stand in line with the other kids. They had a very slow McDonald's worker so Amber was getting quite irritated with having to stand so long. I just love that Amber is being made to do what everyone else is doing. It is helping to show her what we expect and that she can't sit in her wheelchair all day!

I hope you all have a very Merry Christmas!

Wednesday, December 13, 2006 11:38 AM EST

We are so excited! Make a Wish called today. Amber's wish will include Disney World AND Sea Word AND Universal Studios!!!! No Joke! We are so excited we can hardly stand it. But there's more! A sorority group at Bowling Green State University has chosen Amber's wish to raise money for. Make a Wish called to ask if it was ok if they have a party for her before we go to Disney!! This is so hard to believe we are getting so much. It is like a dream.

OK, back to reality for a little bit. Amber's seizures are still hanging around. Our neurologist says they never received the EEG information from the doctor in Texas and they haven't returned his calls. So I am going to call today and get them moving. He wants to see the EEG before he makes any changes. Also, we are going to get her levels checked again to see what they are since increasing her meds. Amber can go days without seizures and then have quite a few for days at a time. I kept hoping it would get better, but really they aren't. Changing her meds makes me a little nervous about our Disney trip, but I am sure we can work around it. He probably won't take her off the current meds until he knows the new one is working. She can be on more than one seizure med at a time.

Otherwise, Amber really is doing well. She is now able to stand at a table at school without anyone holding on to her. (But we are certainly close to catch her!) She has come a long way since September when she wouldn't even stand.

Amber seems to be more alert as time goes on. She has definite likes and dislikes. Each day she goes to school, comes home and usually takes a nap or plays with some toys. Then each evening she eats dinner with us and swings. Then she usually sits on the couch with Daddy and watches tv. She loves cuddling with him or any one of us. She receives lots of kisses and attention and is very happy.

Many mornings she wakes up quite early. For instance, this morning she woke up at 5am and was quite loud. She yells "Mom" over and over and giggles and is just plain old noisy. I go in and tell her to be quiet and she gets louder! Finally this morning I put her in bed with me and she immediately went to sleep. This is becoming a pattern where she wants to snuggle in the morning with mom. In some ways it is nice that she has these desires and is able to tell me what she wants, but of course, I would like my sleep!

We have a camera again. Thanks Grandma Heiss and Pam! I will update with some old pictures soon. It is IDENTICAL to my old one. How cool is that!

Hope everyone is having a great Christmas season. We are just feeling very blessed this year in spite of some very trying circumstances. We have great friends and family and a God who is with us always.

Friday, December 1, 2006 7:23 PM EST

I can't believe how long it's been since I've updated! Amber is continuing to do well. She loves school and is happy most of the time. She still has some rough days here and there, but they are getting less and less. She hasn't had seizures for a few days so I am really hoping the medicine is kicking in. The doctor allowed us to raise it once again. She has gone days without any before and then will have a whole bunch. I am very happy with her class and teachers. They are really pushing her to walk. She walks down to lunch (with assistance, of course) each day. She walks out on the playground and she is put in a stander or a walker often. I am so happy her teachers want her to walk as much as I do.

At Amber's school there is NO handicap parking. This is a public school. I have asked for it and so has another mother who has a child in a wheelchair. It wouldn't be such a big deal, but when dropping/picking Amber up, the parking lot is a mess. We usually end up having to walk quite a ways unless we go very early or late. So far, no response. I am bugged that all public places have to have handicap parking, but our school doesn't! And a school that provides for the handicap! Makes no sense.

We are moving forward with getting a ramp for the front door. It will take at least six months to go through the whole process.

Amber is part of an ongoing study with the doctors in Texas. They are starting to travel the U.S. and having Rett Clinics. They will have one in Chicago in April so I made an appointment for Amber. This will be alot closer than traveling to Texas. Because it is sponsored by "the study", they are basically doing this to collect information and not for an actual doctor visit, BUT I consider it almost the same as a visit. They will still examine her, answer any questions we have, give suggestions, etc. They will not be able to prescribe meds (they can't over state lines), but they can make recommendations. Works for me!

Nothing else is going on. We are trying to enjoy this Christmas season. No stress going on here! I hope we can keep it up.

Thanks for stopping by and please sign the guestbook if you haven't in awhile so I know you're still with us.

I hope you all have a very Merry Christmas and try to reflect on what and why we are celebrating Christmas.

Sunday, November 12, 2006 7:46 PM EST

Hi everyone. Amber is doing well most days. At least once per week she has a really bad day of painful air in her belly and/or constipation. Sometimes I have to pick her up from school. Otherwise she seems to be doing well.

Her levels came back and they are just about as high as they were the last time we checked. I am waiting to hear from the doctor if we can raise her medication one more time. From talking to the nurse, I guess the concern is too much of the medication can cause liver damage. Amber can go days without any seizures and then have some. There is no consistency. Also, on Thursday Amber quit breathing twice. She turned purple both times. She hasn't done that for awhile.

Today we went to the Make a Wish Holiday Party. It was really nice.



The kids got to see Santa and received presents. Amber wouldn't look at the camera because she was so fascinated with Santa. Also, there were crafts, candy, entertainment, face painting, food and ice cream. It is so neat to be part of such a great organization. We now get to attend all Make a Wish functions. It was held at a local high school. I heard there were about 600 people there.



Here is a picture of the whole family and Santa.

We got to sit with Skylar (www.caringbridge.org/oh/skylarbaker) and her mom and sister. We also ran into a family that used to go horseback riding with us. We were talking and they said they went to Disney World with Make a Wish in July and had brought their pictures with them. So I asked where they were sitting and it was the same table we had put all our stuff at!!!!!! So we got to hear all about Disney Make a Wish style and now we are even more excited!!!!!

Friday, November 3, 2006 9:23 PM EST

Unfortunately Amber has had a rough couple of days. I'm not sure what is going on, but she does have a cold. Today she was especially miserable. She is also having constipation again.

Today we went to a school in Fostoria to speak to a group of high school kids about Amber. Miss Kristin set this up. It is where her mom teaches. Amber was definitely not happy most of the time so I was a little stressed. Here we are in front of a group of students and she is crying. But that's life with Amber! So she didn't get to show the sunny disposition that she usually has. The kids were great and had alot of questions that I hope I was able to answer. I am not real comfortable speaking in front of people. I especially like that one student signed the guest book a few days ago! Thanks Tony! Once we were in the car, Amber was fine and has been sleeping ever since, except for getting woke up a few times. I hope she will feel better tomorrow or we are in for a long weekend!

Sorry I am not able to post any pictures since my camera has officially bit the dust. We were able to go to our church's fall festival last week and Amber had a great time playing games and just being amongst all the commotion. She even got to go in one of those bouncy things. (What the heck are those called?)

Then on Halloween we went to an inner city church for their program called "Holyween". We ended up helping the entire time. It was somewhat like our church's Fall Festival. It was a great experience, especially for the kids. I think their eyes were open to others who are obviously less fortunate than us. Even Mariah was quite the helper putting candy into kids' bags.

We are still waiting for the results back on Amber's levels. She is still having seizures at least once a day that I can see.

We have an appt. this month with Amber's waiver program lady. I suppose she is called a case manager. She comes to our home for the appt. I have requested we move forward with a ramp for the house. Karl and I both can't stand the idea of a ramp in our front yard. There is no way to put one in the back because we have steps as soon as you walk in the house.

Oh! And I almost forgot again. October was Rett Syndrome awareness month. I guess I'm a little late in telling y'all!

Thursday, October 26, 2006 10:12 PM EST

Amber is continuing to have seizures. They seem to be getting more frequent. I did get her levels checked today. It will take at least a week to get the results back. They called a nurse in from another floor that was supposed to be good. I had my doubts. But she did it! We are having blood drawn from Andrea from now on! She was good! Amber even started laughing and getting excited when I told her it only took one poke and we were done! It was too cute.

I finally spoke with the nurse in Texas to find out Amber's EEG results. They are mailing the results to Dr. Nagel (our neurologist) here. Anyway, during the EEG, what I thought might be seizures were not. But she definitely had seizures during the EEG. Really, during this test, she didn't have seizures like I usually see. There were just a few times she had something I thought might be a seizure, but nothing like I usually see. It figures that Amber didn't have much going on while she was being tested. I am told this happens often. So we have to see the results of her levels and then I will see what each doctor wants us to do. Did this make any sense? What I am saying is she is definitely having seizures that I can see, but she is also having seizures that I can't see. I am hoping they will just raise her meds one more time. Otherwise, I am afraid they will start her on something totally different and that scares me. Some people never get their seizures under control. I just have to mention that this all started when insurance decided Amber could have generic seizure meds instead of the real thing. Even though we are back with the real thing, they never totally went away.

Today Amber went on her first field trip at school. They went to a pumpkin farm and they said Amber had a blast. She must have because she was definitely exhausted this evening.

Amber still eats some days. Each day is different. She doesn't always eat well, but certainly has some really good meals.

I should have pictures next time. We are going to a couple festivals in the next week.

Thursday, October 19, 2006 10:32 PM EST

More good news! Amber is eating! She ate breakfast, lunch and dinner today!!! For breakfast she had a whole piece of toast with butter and peanut butter, for lunch she had a meal (it was at school and I forget what it was) and for dinner she had a whole hot dog, chips and dip AND 1/2 of a shredded beef sandwich!!!! I'm not joking. This kid is eating like it is no problem. She is actually chewing and swallowing better than she ever has EVER! School has definitely influenced her. She goes down to the lunch room and is with all the other kids and I just know she wants to be just like them. I am so excited and proud of her. Today I only gave her two cans of Pedia Sure through her g-tube instead of four. We probably could have gotten away with giving her nothing by g-tube, but I'm not sure what to do at this point. I want to make sure she gets enough fluids. I may cut back even more tomorrow.

The only negative thing about her eating food is it is affecting her bowels. We are working on it and each day we don't know what to expect. Thankfully I am learning how to get her to go.

Also at school they are walking her like crazy. She walks all the way to the lunch room with the help of her teacher. This is strengthening her muscles and getting her into the habit of lifting and bending her legs. Everything is such a long process for her, but I have hope more than ever that one day she will walk.

Thanks for stopping by. Just wanted to share the exciting news!

Sunday, October 15, 2006 7:28 PM EST

Amber has started having seizures again. I don't think it is a huge problem. They don't seem serious, but I suppose I will call the neurologist and let him know. Then he will tell us to get her levels checked. Then we get to sit in a room for over an hour while they stress and poke Amber numerous times and then I say forget it and we go home. Well, at least that's what happened the last time. For anyone who doesn't know, they check her levels (level of seizure medicine in her system) to see if it is low or high. The doctor compares it to her other times she has been checked and makes a decision. If her level is extremely high, he may be hesitant to increase her dosage, but if it is low, he will definitely increase it.

Anyway, Amber has been having issues with gas pains lately. I even had to get her from school on Friday. It is such an awful cry. I give her different medications to get her out of pain, but it is never soon enough. She had another episode today and it is just heartbreaking to see her go through all this.



Daddy put up Amber's swing in the kitchen. She LOVES it. Amber is in this swing quite a bit. She absolutely loves it. This is going to save us during the long winter months. She giggles and laughs each time she is in it. I know it seems crazy to have a swing in our kitchen, but if Amber is happy, we're all happy!


Of course, Tori requested getting in on a picture with Amber.



I heard about this cup from another mother online so I ordered it last week. It is so AWESOME! It is called a Sip Tip Cup. It has a little thing hooked into the bottom of the straw. When I push the middle of the lid, it brings the liquid drink to the top of the straw, and then it stays up there! Amber is catching on to drinking out of this straw very quickly! Each time I push on the middle of the lid, more liquid comes up. I can also take the thing out of the bottom of the straw and then when pushing on the middle of the lid, the liquid comes up and shoots into her mouth, but then returns back to the bottom like a normal straw would do. It is basically for different levels of ability to use a straw. I am very happy with this new gadget we have found. It helps Amber tremendously. She is now able to practice using the muscles in her mouth and is getting better at it every day.

Thanks for stopping by. Sign the guestbook if you haven't in awhile!

Wednesday, October 11, 2006 2:22 PM EST

Amber is still doing well. She has bouts of crying and it is usually because she is either bored or hungry. I don't believe she is in pain anymore. I am so thankful!

Amber is eating quite a bit by mouth. They have really pushed it at school and she seems to really enjoy food. Sometimes we even skip her tube feeding because she has a complete meal. She is handling the food in her mouth real well as long as it is something she really likes.

Today I got called back to school because Amber's g-tube basically came apart. Her stomach contents started pouring out and they had to run and get a towel and try to close it up. I think Amber was enjoying every minute of all the commotion. She really stressed her aide out completely. When I walked into school she said "I am SO glad you're here." Too funny! Then while I was putting a new g-tube in, Amber had a seizure. Oh darn! That was her first one in a few weeks (that I have seen). Anyway, no harm done. The g-tubes don't seem to be lasting six months like insurance says they should.

Anyway, that is all the news we have. Life seems to be settling down in regards to Amber. We are still quite busy having five kids and all their activities, but we are enjoying Amber's happy days. Most days when she gets home from school I don't even take her in the house but straight out to the swing set. She sometimes will stay out there until dinner time. We all take turns running out there and pushing her. She LOVES it. I am nagging Daddy to get her swing hung up in the house for the winter. She needs it to keep her happy (and us too!)

Thanks for stopping by. We are still getting excited about Disney!! (Just thought I'd mention that.)

Thursday, October 5, 2006 11:06 AM EST

We have been busy! I can't believe it has been so long since I last updated. Amber is doing well. She had a really bad cold last week and into this week. She missed two days of school and I even took her to the doctor. She is all better now. She was very cranky and miserable. Her seizures seem to have gone away. Every once in awhile I think I see one.

We are continuing to vent her only at diaper changes and feedings, or if she gets cranky. It is going well. Lots of air comes out when we do vent her.

School is going great. Amber enjoys it so much. So much that on the weekends she is quite cranky unless we are on the go. She does not like sitting at home. There just isn't enough going on for her unless someone is sitting with her playing, which is hard to do, but we try.

My digital camera is broke so I need to get it fixed so I can post pictures again.

We haven't done horse back riding for awhile. We had to stop until we got the air in her belly under control. So she lost her spot. We are just waiting for a call to get back in.

There is nothing more to tell! This is good for us. We haven't had a crisis in quite awhile. Yippee!

Tuesday, September 12, 2006 7:19 PM EST

We are still going strong here. Amber is doing great. School is great. They are working Amber and walking her lots and lots. Her legs are really strengthening. I can tell. She is very proud of herself. I am hoping she has the "will" to be like the other kids and keeps trying to walk.

Amber hasn't been sleeping well. She is quite happy during the night, but last night I know for sure she was up from 3:30am-6:30am. I am starting to give her Melatonin (starting tonight) to see if that helps her. It is a natural sleep aid. Surprisingly, it doesn't seem to affect her days too much. I think she enjoys school so much that she doesn't want to miss anything.

Since the weekend we are trying something new. I am no longer venting Amber continuously. We do it whenever she gets fussy or at feedings or diaper changes and it's working!! Lots of air comes out, but at least we aren't having to have her hooked up to that tube coninuously. When I know she is having a bad day, I will hook her up, but otherwise we are going to keep trying things this way. It makes life so much easier for us and I know it is better for them at school, especially when they are trying to get her to walk everywhere.

And now for our BIG news. Make a Wish came out today. They brought Amber a Build-A-Bear and the other kids each a toy. I had applied last year. Our wish has been granted to go to Disney World! It now seems real to me. We had lots of paperwork to sign and they went over everything with us. We are going 2/1/07 for seven days!! They will come back about two weeks before the trip to actually grant the wish, but it is a for sure thing now. I am so excited I can't stand it. I even got quite emotional (doesn't take much for me to do these days) a few times when she told me what was going to happen. We will be picked up by a limo!!! and taken to Detroit Airport and all of us will fly to Disney World. We will get a rental van and spending money. She said we won't have to wait in any lines and we will get front row at any shows!! This really is a dream come true. What was really neat was Amber just sat there while I answered some questions and then she asked what would be Amber's favorite character if she could have a meal with one. So I said I don't know, I think Mickey Mouse. So then I looked over at Amber and asked her and she got all excited!! It was so perfect. So then I started asking Amber other questions and it was so neat that the lady saw that Amber really was getting what I was saying and that she actually answers me with her eyes. I love it when others see that she really does understand what we are saying. So this is going to be the vacation of a lifetime and I honestly think I'm more excited than the kids. I really am trying to stay calm, but it's hard!!

Wednesday, September 6, 2006 9:50 AM EST

Hi everyone. We are still doing well around here. It seems like it has been a very very long time since I have been able to say that. Usually there is something going on. It actually feels kind of weird. (that's a good weird!) Amber does have seizures once in a great while. I still don't know the results from the EEG in Texas.

Amber is thriving at school. I am so happy with them. Yes, you heard that right. They just needed to be taught how to handle Amber and they are doing great. I still thank God for such a complete turn around in this situation. Amber is on her feet and walking daily with assistance. They are feeding her at lunch time. She seems to be eating better for us. She chews and swallows the food well. Sometimes they even skip her g-tube feeding, or give her half because she eats so much at lunch. Papers come home from school and the teacher writes on them what Amber did. They tell if she chose the color she used, how much help she needed and things like that. It is so cool to see. Also, they are going to start keeping a journal of what is going on. The teacher tells me each day, but is now going to put it in writing so we have something to look back on for reference. Cool!

Last week I spoke with Judy, Dr. Glaze's assistance, in Texas. I wanted to know Amber's mutation of Rett Syndrome, which is 710DEL G. I asked if another girl has that same mutation, does that mean they have the same symptoms. The answer was no. Then she went on to explain the whole hereditary/genetic thing with Rett Syndrome. I always seem to have a hard time understanding all this scientific stuff, but I think I finally "get it" this time. It was exciting for me to have a light bulb moment! I so want to understand Rett Syndrome better. I absolutely LOVE picking up the phone and talking with them about any questions I have. No one here can come close to having the knowledge they have in Texas.

A new Rett Syndrome Handbook is coming out this month. The old book is so easy to read and FULL of information. This new one is supposed to be much larger. I sent in bunches of pictures so I am hoping just one of Amber got into the book. Will keep you posted!

While in Texas, they told me the Rett Syndrome Assoc. has started sponsoring Rett Clinics around the United States. The Rett team from Texas goes to different states for those that aren't able to travel. They will be having one in Chicago next year. I need to start making calls to get us in. That is about a four hour drive for us. Lots closer than Texas!

Thanks for checking on us. I still run into people from time to time that tell me they check Amber's website. Hey you! If you have never signed the guestbook, please do it just once! That's right, I'm talking to you!

Friday, August 25, 2006 7:00 PM EST

School is going much better now. I never dreamed in just a week I would be feeling ok about it. Thank you for your prayers. I am still concerned about the classroom being so hot. Dr. Glaze sent a letter out to us today that states the need for air conditioning. I really don't know if I am ready to ask for this yet. If it starts getting too hot, I will keep her home. The teacher and aides are really trying to work with us. I think the first day was just a REALLY bad start and we are all on the same page now. I was somewhat in shock to know they had no experience with a g-tube and I felt like they would never figure it out. But really I am happy with the way things are going. I can't believe I am saying all this considering how upset I was.

On top of the school situation, I have been pretty sick. I have this infection in my arm. I have an absess (or boil?) like Amber sometimes gets on her bottom. Well, it is really infected. I went to the doctors and got on antibiotics that are not working. So I am trying something different tomorrow and if that doesn't work, I will definitely have to go back to the doctor. I have been sleeping quite a bit and feel bad. The infection is making me feel very sluggish and run down.

Back to the Texas trip. We saw Dr. Motil, the GI doctor.



She told me the mucous in Amber's poop is very normal and we all have it. I'll leave it at that since I am sure you don't need me to go into details about this subject that I seem to always bring up! She checked Amber's back for scoliosis and said it looks good so far. Girls with RS are very prone to scoliosis. She said we have to continue venting Amber as we are doing. The Ferrell bags just aren't going to work. Unfortunately what we are doing now is easier. She said we need to watch Amber's weight and height closely over the next year and may adjust Amber's feedings as she is getting quite chunky. She prescribed a medication for excessive bacteria in the stomach that may cause some air in her belly. She feels the air is definitely from Amber swallowing, but wants to rule out anything else. She is also recommending to Amber's pediatrician a test to see how quickly Amber is emptying the contents of her stomach, which also could be causing excessive air. Not sure if we will be going through with that test or not. I will have to talk to the Pediatrician.

I had booked a room at the Holiday Inn in case we couldn't get into the RMH. Well, Friday morning while sitting at the hospital, I realized I never cancelled our Holiday Inn room!!! So I called and they were nice enough not to charge me. Whew!



Here is a picture when Amber first got the wires hooked up for her EEG.



Sleeping peacefully during the test. We were not allowed to put any blankets on Amber. They needed to be able to see any movements she made. So I tried to keep the room warm, but we ended up being either too hot or too cold. At one point I had four gowns on her for warmth.



Here is Hayley in our bed (a pulled out couch), right next to Amber's.



Amber with toys from the playroom at the hospital.



Amber getting her wires removed.



We received this from the Ronald McDonald House. It is called a Dundy. Dundy is a gentle reminder that we are held safely in God's hands at all times; that He never leaves us alone during our joys and struggles. To learn more about Dundy, visit www.ccdundy.com Notice Amber has scabs on her head from the wires. I guess they wrapped her head too tight. She really handled it well though!



When I got home I had a surprise waiting. Karl had put in a new kitchen floor for me. I had picked this floor out years ago and he did it while I was gone!

Amber's seizures seem to be getting better. The last one we saw was Monday night. We still don't have the info. from the EEG done in Texas. We did receive a call from them, but they weren't ready to discuss it.

Thanks again for your prayers and support. This was a very tough week and I feel SO much better about her school. I still can't believe I went from being so upset to now liking it in just five days. Do you suppose it's a "God thing"?

Monday, August 21, 2006

UPDATE: 10:04 PM Monday, August 21, 2006

I felt I needed to write again since I left things on such a sour note. I called the Special Needs Supervisor for our county and voiced my concerns about today. She said she would meet us at the Open House. Karl, Amber and I went and I do feel better. I asked that I be called when Amber whimpers, whines or cries for longer than ten minutes. I don't care if she is fine when I get there, I still want the call. I requested a cot, which we will be getting. I also asked that last year's preschool teacher and speech therapist come to her new school to give advice on how to care for Amber and that will also be happening. I also voiced my concerns about the heat. Karl checked while we were there this evening and it was 85 degrees in the classroom!!!!!!!!!! We couldn't wait to get outside to cool off. The suggestion is they will spray her with water periodically to cool her down. Yeah, you heard that right. If that doesn't work, they will check into air conditioning for the room. We noticed on our way out the teacher's lounge has a/c. I WILL be getting a letter from the doctor in Texas this week concerning the a/c. So I don't know what tomorrow will bring. I can't see leaving her in that heat. It's not even real hot days right now, but that room sure is hot.

Thanks so much for your emails and phone calls. I feel your prayers and love. I know God is in control and maybe we are just making the way for other special needs kids. I don't know. Amber seemed to be extra special and vulnerable today. We told her we're fighting for her and I know she enjoyed Daddy coming and talking to the teachers tonight. They really aren't bad people, just seem to be a little uninformed.

Will keep you posted on our big drama of a life!


Monday, August 21, 2006 12:12PM

Today was Amber's first day of school. It was awful. I took her and stayed for an hour. There was a teacher and two aides. No one has a clue about a g-tube. Not a clue. The teacher says she had one student seven years ago that had a g-tube. This is a special needs classroom. I don't think anything went right. I asked that Amber be put down for a nap while I was there as she started rubbing her eyes and whining. I was told they like to keep the kids going and don't usually take naps. I said she needs a nap, where's the cot. No cots. She was able to find a mat that she laid on a rug in the middle of the floor. Amber snapped out of it within a few minutes and we got her back up. I said Amber should not cry, if she does, she is probably in pain. Please call me if she cries. I am nearby and she should not cry. I came back 20 minutes before lunch time and Amber was sobbing these short cries and was shaking terribly. She was scared and hurting. I think possibly her AFOs were hurting since she hasn't worn them much this summer. I just held her until she fell asleep in my arms and then I brought her home. I am just sick. I can't stop crying and I don't know what to do. I just want to keep her with me forever and never let her away from me again. I am an emotional mess today and I have decided not to do anything drastic and give it a try again tomorrow. We WILL be getting a new IEP (Individualized Education Plan) with everything detailed as to what we want. The room was stifling hot with fans going. There is so much that went wrong today. I am definitely going to get an advocate for Amber for our next IEP meeting.

Thanks for listening everyone. Sometimes I debate on telling some of the crap that goes on in our lives, but I guess this is what the website is here for. I am feeling very protective of Amber right now. Before I left this morning, she kept staring into my eyes trying to communicate with me and I told her it was going to be alright, but it wasn't! I can't stand that Amber is at the mercy of others.

I have more pictures and things to tell about Texas, but I'm not in the mood right now. I can't wait to talk to Dr. Glaze or Judy, his assistant. I know they will steer us in the right direction concerning the school situation. Tonight is an open house and I think we may go. Why? Because I like torture.

Saturday, August 19, 2006 8:49 PM EST

We're home! We got out of the hospital about 1:30 yesterday afternoon, went back to RMH, then Hayley wanted to go shopping again. The last thing I wanted to do. I was exhausted and wanted to lay in bed the rest of the evening. I felt I owed it to her since she had to endure so much boring down time in the last week and was such a good sport about it. RMH had an art class at 3pm, so we went to that and then we compromised on Target and off we went. It was a successful shopping trip and she was happy. Then we had to pack and clean our room. At RMH you have a check list of cleaning you have to do, such as wash down the bathroom, vacuum, strip the beds, clean the mirrors, etc. So we had to get that all done. We finally fell into bed about midnight. We were back up by 3:15am to catch a taxi by 4:30am. Our flight was at 7:10am. We had to have our room inspected before leaving, which will go in our permanent file. We obviously wanted all to go well so that we are welcome there in the future. Amber again had a seizure going through security!! I knew that was going to happen since she didn't have a really good one in the hospital, but as soon as we get out, she does.



Here is Dr. Glaze and his assistant Judy. We didn't get as many seizures on the EEG as we would have liked, but there were definitely some that showed up. Dr. Glaze visited us in the hospital on Friday (in addition to visiting us on Thursday and our appointment on Wednesday) and said that she is having seizures that we are not seeing outwardly. He also said some of the times I claim she is having a seizure, she is not!!! I am amazed, but I know he knows what he is talking about. He was off to catch a plane so he said when he returns he will study the EEG more closely and we will hear from him on Wednesday.

Dr. Glaze is so wonderful and so knowledgeable about Rett Syndrome. Going to Houston gives me such peace and satisfaction knowing that I am talking to one of the top doctors in the country on RS. He knows it all. No guessing and trying to figure things out. He tells me what is going on and I listen. He has answers to my questions and I am never skeptical as to whether it really is true for Amber like I do with so many other doctors.



Dr. Glaze is a very mellow soft spoken man so this picture was quite funny when he was getting a little goofy.



This is the entrance to the clinic.



Here is Amber in the waiting room for the Rett Syndrome Clinic. It is a HUGE room with large windows along one wall. Makes the wait not so long when you are able to watch the activities outside. Also there were about four computers set up so Hayley was able to play games. As for me, I found a cushioned bench and took a nap! This is not uncommon to see and I took full advantage of the situation!



Here are Hayley and Amber on our ride to Houston.



This is our room at RMH. The picture doesn't do it justice. It was an extremely large room and had windows from ceiling to floor. It was twice the size of a normal hotel room, in addition to a very large hallway and bathroom.



Here is our door at RMH.

Amber is participating in a research study sponsored by the National Institute of Health. Dr. Glaze is heading this up. There will be a total of 1000 subjects from 3 institutions. The purpose of this study is to understand the potential for effective therapies. We were asked NUMEROUS questions about Amber regarding when she gained and lost skills. I SO regret not documenting what has happened to her in the last five years. It is very difficult to remember when we started noticing things going wrong and all the details. Having this website will definitely help in the future when I need to find out info and can look back at the journal history.

Thanks for following us everyone. It has been a very exhausting week. I am amazed at how little sleep I am able to go on. I think my body is getting used to it. I did end up taking a three hour nap today. In some sort of odd way I am somewhat sad to be home. I was getting to know people and wonder what will become of them. We met children who have cancer (a 4 month old), waiting for transplants and some other major ailments. Today was a little boys birthday at RMH and everyone was invited to the party. Yesterday he stopped me and asked if I was coming to his party. I said I was going home and couldn't make it. He said "Oh but you WILL be giving me a present!" and he skipped away!

I have more pictures and more to tell, so will write again soon.

Thursday, August 17, 2006 5:45 PM CDT

I will try to update as much as I can. I have to go to a certain floor at the hospital to use my laptop.

We saw two doctors yesterday. The GI doctor was very helpful. There is so much I could tell. She does feel the majority of Amber's air in her belly is from air swallowing. She has some ideas on helping minimize the air in her belly, but feels we need to continue to vent her. She is recommending a few tests be done when we get back to Ohio. We discussed Amber's weight and I am to watch it closely and if it rises too much more in the next year, we may need to make some changes in her diet.

The other doctor was Dr. Glaze. It was a fun appt. and we all laughed alot. He answered alot of my questions and I tried to understand them as best I could. I asked about what the future holds for Amber and will she lose more skills. I told him how I see some women with RS that are real bad off. He said it is imperative we keep Amber standing and moving. He says the therapy and what we do with her now will greatly determine how she turns out in the future. I told him Amber has definitely lost skills over the summer due to not being in school and/or not horseback riding for awhile. He said she must be in summer school and not to let that go again. He also said she must always be on a bus with air conditioning. For the time-being I will be driving her, but in the future, I am sure she will ride a bus. If we have any trouble getting anything we need (such as air on a bus) he said to let him know and they have all the forms needed to get what we want. I also asked him about Amber not sweating EVER. I really noticed it here in Houston. We unfortunately were out in 96 degree weather a little too long and it was really affecting Amber. He said the no sweating is the same reason Amber's feet are always so cold. It is her autotomic (I know I spelled that wrong!) nervous system that does not work right, just as most everything about her doesn't work right. RS has completely affected her brain. We have to really watch her in the heat and the cold. We talked about RS being genetic, not hereditary. Now that's a difficult confusing subject!

So Amber was admitted about 5pm last night and I have only seen one seizure. They did wake me up during the night because she had one then too. We are hoping for more. We will be leaving here (the hospital) tomorrow afternoon. I arranged for a flight on Sat. morning, instead of Fri. morning. I am looking forward to sleeping in a bed and enjoying Ronald McDonald House for a few hours tomorrow night.

There is so much more I could tell, but I need to get back to Amber. Hayley has been absolutely great. Amber has been in a good mood, other than throwing up a few times last night and then this morning. I have no clue what that was from! I am so glad we came. It was well worth the trip. They really do a good job with the EEG. Someone is watching Amber at all times on video. They are across the room from us and don't miss a thing. Dr. Glaze will be out of town tomorrow and this weekend, but said we will be contacted about the EEG next Wednesday.

I have lots of pictures so I will post them when I get home. Thanks for checking on Amber!

Wednesday, August 16, 2006 6:03 AM CDT

We're in Houston! Our day started out yesterday at 4:10am. My sister was going to take us to the airport and got a flat tire on the way to our house!! So Karl ended up having to take us. I had to laugh! Isn't it our luck!

On the way to the airport, Amber had a seizure. Then she had another one while we were going through security. The lady asked me if Amber was nervous and that's when I realized she was having a seizure. The plane ride was excellent and actually seemed to go very quickly. It was actually about 4 hours, not 5, like I had thought.

When we got to the Houston airport, I immediately called the Ronald McDonald House and there was only a recording. I kept calling and no one answered!! So we hopped in a taxi and headed over anyway. We had him wait as I ran in and found they did have a room for us! Someone had never taken their phones off "night mode" and so they hadn't received calls all morning! So glad I took the chance and just came on over. Ronald McDonald House is absolutely wonderful. Our room is big and spacious. We have been able to eat here. Pop is 25 cents. There are so many extras. They have a washer and dryer. We are very happy here!

Yesterday we went shopping. Unfortunately, I wasn't able to take Hayley to the big mall I promised her. A taxi ride was $25 each way!!!! I didn't realize it was so far away. So we ended up going to Rice Village, which has tons of stores. It was fun and I know she enjoyed herself.

We ARE doing the video EEG. The hospital said the doctor has now ordered it for 48 hours!!! Boo Hoo!! We will see him today and find out more.

Well, I must cut this short. Amber is being extremely cranky and it is the early morning so I need to get her back to our room. My laptop does not work here at RMH.

Hopefully will update later.

Friday, August 11, 2006 4:39 PM EST

Amber is doing fabulous. She is very happy and content. The only problem is the seizures are back. They probably never went away, although they appeared to. Some are pretty severe. I have noticed about 4-5 a day. Our doctor has raised her seizure meds once more. I picked the medicine up, only to find they had given us the generic again. So now they have to get approval from insurance to get the correct meds, especially since we cannot return the generic. Once you walk away from the store, it's yours.



Amber had so much fun at her birthday. She shared her party with her sister Mariah, whose birthday is tomorrow.



It was so great to see her laughing and smiling.





She especially enjoyed opening her presents and concentrated real hard trying to grab hold of the wrapping paper.



She especially liked this present from Grandma Heiss and Pam. She giggled alot and couldn't take her eyes off it.



By the end of the night she was quite pooped and fell asleep next to Aunt Terrie.

Today we received a call from Dr. Glaze's office in Texas. Because of the seizures, he would like a 24 hour Video EEG done at Texas Children's Hospital while we are there. After much consideration we decided to go ahead with this. Obviously staying in the hospital for 24 hours was not part of my plan and I know it will be hard on Hayley. So I have decided to stay in Houston an extra day so that we can do something fun. This is only if insurance will pay for the EEG, which we won't find out until Monday or even Tuesday after we get there. Also, if we do the EEG, we will most likely have to cancel our appt. with the physical medicine doctor on Thursday. Also, our appts. have been switched around so we see Dr. Glaze (neurologist) and Dr. Motil (GI doc) on Wednesday. We have really thought this through and know it is what we need to do. After all, why would we go to Texas and then not do everything the doctor recommends. I questioned us just doing the EEG here, but am told he has trained the people there and will be using the equipment he is familiar with and this is what he recommends.

We are going to have to pack differently. ALL liquids (including toothpaste) have to go in our check-in luggage). After calling the airline, I am told we shouldn't have any problem taking some of Amber's Pedia Sure as carry-on, but that I might have to drink some in front of security. If you don't know what I am talking about, turn on the news!

I am really hoping we get into Ronald McDonald House as it will save us so much money in food and lodging.

Hopefully I can update while in Texas. Please keep us in your prayers this coming week.

Saturday, August 5, 2006 8:27 AM EST

Amber is still doing well, other than the times when the air doesn't come out of her belly. We have got it down pretty good and can massage it out of her. I did get the Ferrell bags from another mother. The tubing is so long that it makes it an inconvenience. I have to play around with it and just haven't had the time. Also, I am hoping the doctor in Texas can give us an idea on the best way to use it. I am not sure it is going to work for us.

I just love Amber's new wheelchair I got from another family. I know her PT therapists will have a fit to see us using this one, but she likes it and I like it. She isn't supported in it as well, but she sure looks more comfortable. It is so light weight. I just pop it in and out of the van and in and out of the house. Also, Amber is able to sit in it for hours and I can move her all around the house so she is with us more. She would never be that comfortable in her other one for that long.

I think the seizures are finally gone. So it definitely was the generic brand of medicine that brought them on.

We get back from Texas on a Friday and school starts on Monday. I didn't realize it started already until I got something in the mail!

We received the Therapeutic Listening equipment and CDs. So far we have only tried one CD and Amber doesn't like it one bit. So I tried it on myself. It made me sick to my stomach! I tried it two different times and it really does make me feel queasy. It is music playing, but the sounds are weird. Sometimes the base goes in and out. It is quite annoying. I need to call the therapist who recommended them and see what she says. I am sure we will have to play around with these and get Amber used to them.

We finally found out our plane reservations. We leave on 8/15 at 7:55am out of Detroit. Unfortunately, the flight has two stops, although we won't have to get off the plane. I am quite anxious about that as it will now be a five hour flight and we will take off and land three different times. They also booked Hayley's flight for us, but I have to pay for it. At least we know we will be sitting together. I also called Ronald McDonald house and was put on a waiting list. We will call there the morning we arrive to see if there are any openings. I hope so. The lady was so nice and told me all about the place. She even told me not to give up if I call in the morning and there are no openings, but to call again around 2pm that same day. So we will see. I just know if we stay there we will meet alot of special people.

Did I mention I was going to get weights for Amber's legs to hold her in her water ring in the pool? Well, they worked a little, but not good enough. So now I am looking for something else that might work for her. She absolutely loves the water and all the kids splashing around her. I am going to keep the water weights because what better way to strengthen her muscles. I tried them on and they sure do give you a workout if you move at all!

Thanks for all the new guestbook entries! Very cool!

Thursday, July 27, 2006 11:18 AM EST

Amber's Endoscopy went well. I got to go back with her until she was asleep. We are waiting in recovery now. (I am using my brand new laptop. woo hoo!) She was gagging quite a bit and quite cranky when it was all done, but hopefully after sleeping peacefully, she will feel better. Everything looks great. The doctor even gave us some pictures of her stomach and around her esophagus. So hopefully that rules out there being any more acid reflux problems. I will take the pictures and reports to Texas. Also, her Fundoplication looks good. I LOVE her surgeon. He is the most personable, kind person and seems to really enjoy his job.

Thanks for the guestbook entries! I got some great ideas. I love hearing from you guys.

Make sure you check out our video montage up above. Just click "play" on the picture.

Thursday, July 20, 2006 9:51 PM EST

We went to the surgeon today. He had only heard of the Farrel bags, but has never actually seen one. It is not a real common thing. That is why we are having so much trouble getting one. We are still working on it. We don't want to order a whole case (this is the only way they come) and then not use them. We wouldn't even be able to give them away because no one knows of anyone that uses them! Also, we have to get special approval from insurance to even get them and if we want to go with something different after ordering a case, it wouldn't go over real well! Anway, he has scheduled an Endoscopy for next Thursday, 7/27. Amber will be put to sleep for this and he will go in through her mouth with a scope and look down at everything, especially the fundo wrap that he did. We want to make sure it didn't come undone. He doesn't think so because she would be vomiting again, but we are still wondering about doubling the Prevacid dose and her immediate improvement. So something is going on. Tomorrow I will call the GI doctor in Texas and see if she recommends we do any more tests before we go down there. The surgeon also suggested there is a Farrel tube that lets the air out, but not in. Again, he said he doesn't know enough about it and is currently researching it.

Amber has had some really great days.



Here she is with Hayley in our pool. Hayley is her sister that will be going with us to Texas. Since it has been so hot, we have been spending alot of time in the pool and Amber LOVES it.



Here is Amber, Hayley and Tori. I have a float I put Amber in, (sorry no picture here) but her feet and legs always float up and she loses her balance. So I ordered some underwater weights to put on her ankles. Not sure if this will work, but I am going to give it a try. I am looking for something she can stay in by herself so she can be out in the pool with all the kids without someone holding her. She would just love that.



Amber kicking back on her raft.



Amber totally wiped out and catching some zzzzz's.

I went back and got the Convaid Cruiser this week. It is like brand new. I just love it. It will be great to have two wheelchairs. The Cruiser can be folded up so it will work out so perfect when we go to Houston. I also was able to get a swing that will hold Amber's Tumbleforms chair. We are going to set it up in the house. I will get a picture of that once it is set up. I just know Amber will love it.



Here Amber is on her wedge. It raises her head and seems to help her sleep well.

I got all the last of the paperwork faxed in today for our flight. A woman called me soon after and asked a few questions. She said she is going to try getting Hayley's flight paid for also. She said it depends on what airline they end up going with. That would be so great! So I hope to hear from them soon because I am a little nervous about there not being room for Hayley or us not being able to sit together. I have no clue if she is going to freak out or be just fine. It could go either way. I really don't talk to her much about the flying because it freaks me out!!!

So Amber has had some really great days. The last two days have been just ok. She didn't have seizures as soon as we switched back to her real seizure med, but yesterday and today she has had quite a few. She even had one at the surgeon's office. They still aren't real bad, but she was quite cranky and tired today so I think the seizures have something to do with it. Also, she is still getting alot of air in her belly and seems to be in quite a bit of pain periodically. The surgeon was able to see how much air is coming out. He said they don't see this alot, but it does happen. I am finding more and more that this is really uncommon. That is why I am hoping the doctors in Texas will be able to help us because I know they have seen this more than anyone.

OK, I think that's all. If you haven't signed the guestbook, will you please. Pretty please!

Friday, July 14, 2006 1:48 PM EST

Amber has had two wonderful days of being content and totally no crying. Today she is at PPC (special day care) and they say she has done well, but is just a little fussy. I really believe doubling her Prevacid for acid reflux has made a huge difference in the last couple days. Gosh I hope this will do the trick. I have asked the doctors different times to up the dosage and they wouldn't until now. I really believe the air in her belly and her acid reflux are the main problems right now. The pooping thing is actually under control for the time-being.

Dr. Nagel was able to get the seizure med switched already to the real thing so we should see results soon.

I received a call yesterday that the money I applied for through www.specialkidstherapy.org was approved for Therapeutic Listening. I have wanted to get this program for a couple years and was able to find a way to get it paid for finally. I am excited to start using it. I will explain more about it at a later date.

Yesterday Amber had blood drawn and was poked three times!! No crying. She is such a strong girl.

I made a 7/20 appointment with Amber's surgeon to see about these bags for continuous venting. I got some great advice from other moms off of the RettNet and will take their advice with me to the appt.

Thank you as always for visiting us. Thanks to people who have told me they read Amber's page or when you email me. It really is a boost for me.

Wednesday, July 12, 2006 6:20 PM EST

Amber is having seizures again. I think this has been going on for awhile. It is very hard to tell, but they do seem to be getting worse and more frequent. Dr. Nagel has increased her seizure med. He believes it is because insurance switched her to generic meds over a month ago. So now he will try to get the insurance company to get her back to the real thing.

Amber really hasn't been doing well. It must be very confusing reading my posts. It is like a roller coaster. I so want her to do well that just because she has one good day, I believe everything will be fine. She whines and cries so much anymore. In between those times she will get really happy. Each hour we don't know what to expect. We saw Dr. Fay today. Amber was sad and then very happy while we were there. It was good for the doctor to see.

We are still working on getting these venting bags. Dr. Fay has researched this quite a bit and she says there is even a different g-tube that can be put in for venting. She wants us to go through the surgeon who put Amber's g-tube in and/or see what the doctors in Texas say. So I am hoping for some answers. I find just venting her doesn't get it anymore. When she starts to cry, I have to get her on her back (sitting doesn't work) and then I massage her stomach and push the air out. This usually helps.

Amber will have her levels checked again (for her seizure med) and also her potassium and another test for a bad bacteria that I heard about from another mom. Also, the doctor doubled her reflux medicine.

The travel arrangements are moving right along. I think I have our plane tickets paid for through Miracle Flights. I have to have the paperwork in by 7/20 and then I wait for confirmation. I have decided to take Hayley, my ten year old. The more I thought about going alone with Amber, the more stressed I got. The extra set of hands will be a great help. Hayley is very excited to fly for the first time and I am looking forward to spending time with her. I will not know if we are able to stay at the Ronald McDonald house until we land in Houston and I make the call. In the meantime, I booked us a room at a hotel right next to Baylor Univ where Amber's appointments are. This will be so much easier than the last time. There will be no need to take a shuttle.

Yesterday I was able to purchase a Tumbleforms chair and a wedge (used to lay her on) from another family. I am going back next week to purchase their Convaid Cruiser. I had to think about that one because it was a little more money. I will be using it instead of our wheelchair when we go to Houston. It folds up and will make things alot easier getting in and out of a taxi and also for the plane ride.

I really can't believe things haven't straightened around for Amber. It seems like one thing after another keeps happening. I just know her entire life can't continue like this. Lately I haven't been quite so positive and have been getting down. I find great comfort in my RS support group online. Only they know what we really go through. I try to remember the valleys we go through are where we find our treasures. I heard that in a sermon once and I don't think I will ever forget it. Looking back at the hard times we have been through, we have learned and come out stronger and better people because of them. But if I had a say in the matter, I would say "NO THANKS!"

Sorry Caring Bridge friends that I have been such a slacker. I read your pages, but have not signed your guestbooks in a long while. I will try to do that very soon.

Friday, July 7, 2006 5:15 PM EST

Amber is continuing to do well. Each day she has episodes where I have to get the air out of her belly. Otherwise, it usually comes out on its own.

I tried to get these bags (ferrell bags?) for venting Amber instead of the open syringe and have run into some roadblocks. The Pediatrician didn't feel comfortable prescribing them, so I called the surgeon who put in the g-tube. He prescribed it, now we have to get approval from insurance but the nursing service doesn't want to go through all the hassle if it isn't even going to work since they come in cases and are expensive. They suggest I find just one to try. So right now I am waiting for a response from the GI doctor in Texas to see if this is what we really need or are there any other suggestions. I don't even know what this bag looks like and have never heard of it so I'm not sure about any of this.

Our appointments in Texas have been moved to August 16 & 17. I will try to stay at the Ronald McDonald house, but last time they were booked. I am also trying to get help with the flight since this is for medical reasons. Our last trip there ended up being more expensive than I anticipated.

So that's all for now. Amber's days are happy most of the time, but it just seems like we could be doing more. I don't like that she is in pain each day, even if it is for a little bit of time. It certainly helps that we at least know the reason though.

Hope you all are enjoying your summer!

Thursday, June 29, 2006 7:42 AM EST

Amber is doing well. She still has times where she cries because of the air in her belly, even though we are venting her almost continuously. I am usually able to massage her stomach and the air comes out eventually. She is immediately happy once the air comes out. It feels so good to be able to do that and actually know the reason why she was crying.

We went camping over the weekend and Amber did well. Again, she had her moments, but for the most part she did very well.

Nothing else is going on. Our basement flooded from a HUGE rain we got last week. So we are in the process of putting it all back together. Most of our basement is either in our backyard, front porch or kitchen. I was pretty down about it, then realized how lucky we are because our insurance covers it. So many people don't have it covered.

I am in the process of getting these bags to vent Amber so it isn't wide open. Someone suggested it to me so I have no idea how it will work. We had to get a script, get them ordered, etc., so I hope this will work. It would be nice to have everything completely closed so there are no accidents.

We are still planning a trip to Texas. I am waiting for a call back from them to make sure of the date. So far it looks like Sept. 1, but I was told they would get us in sooner.

Thanks for sticking with us everyone.

Tuesday, June 20, 2006 10:19 PM EST

Amber is still doing well most days. She has still had a few bad days. All because of air in her belly/bowels. I am finding she needs to be vented at all times. She wasn't vented on Saturday for horseback riding and today for therapy. The two days she didn't do well. Saturday was real bad, and today was only for half a day. (I can't believe I say "only" because it really is awful when we are going through it.) When she cries, she cries real hard with lots of tears. We are continuing to make changes and will be starting a new med for cramping. The whole pooping thing is irregular again so we are working on that. Also, I am trying something new tonight and keeping her tube open all night. It occurred to me that maybe she is waking up during the night and swallowing lots of air. When sleeping, she does normal breathing so we didn't find it necessary to keep it open all night.

I hope I am making sense to you all. I realize if you know nothing about a g-tube, this all might be quite confusing. I know I knew nothing about them before Amber.



Here is a picture of Amber with her tube. Notice it is hooked on to the right side of the chair. Eventually we are going to have to figure something out. I would like to try pinning this tube to her clothes so she can get in her walker, do therapy, etc.

So I am hoping tomorrow will be better. She wasn't able to stay at PPC today because she was so upset. They would have kept her, but I just can't stand the thought of not being with her when she is having a rough time. Also, I feel like I know her better than anyone and can get the air out quicker. I just want to make sure everything possible is being done for her.

We are going camping this weekend in a tent. Our yearly outing with church. I am hoping and praying Amber will do well and we can have everything under control by then.

Today we went out to eat and there was a machine at the restaurant where you can win stuffed animals. A little boy won a Strawberry Shortcake doll and asked if Amber could have it. He came right over to our table while we were eating. Then he won another one and gave her that one too!!!!!!!!! What is with these boys! I can't believe how Amber attracts people. I told that boy he was so very nice for giving something to Amber. He was about nine years old.

I want to mention one more thing. This whole breathing problem is NOT because of the g-tube. It is because Amber is swallowing air. The g-tube is allowing us to get the air out.

Thanks as always for all of you that care for her and check on her.

Wednesday, June 14, 2006 12:27 PM EST

Do I dare say it? I just have to. Amber is doing FABULOUS!!!! I am so excited to have her back to normal. This is big. Leaving her g-tube open has made all the difference in the world. She had soooooo much air in her belly and in her intestines. This is from swallowing air. It's Amber's new thing. She likes to keep us on our toes. I notice she doesn't grind her teeth anymore. She must have traded that in for swallowing huge amounts of air. What she does is called aerophagia. I learned that from the nurse in Texas. Yesterday Amber was very sleepy and absolutely no air came out. I thought maybe we got all her air out and we could go back to normal. That was just wishful thinking. So we are back to leaving it open again. I am so thankful for her happiness right now.

We saw her Pediatrician (Dr. Fay) on Monday and she was wonderful. She is in contact with the doctor in Texas. Everything is finally falling into place. Today the nurse from Texas AND Dr. Fay's office called to see how Amber was doing. Now THATs the kind of doctors I like! I am so touched that they cared enough to see how she is doing.

We are still going to Texas. I am not sure where we are supposed to go from here. Living like this with the tube open all the time creates some real problems. It certainly would be hard to ride horses. I don't think I would want her tube open in the arena with all the dirt and dust. So we may have to put a hold on that for awhile. I'm just trying to take one day at a time.

I think the Metamucil has helped Amber tremendously. She has never taken it before. Also, she started the Florastor (I think I spelled it wrong in my last posting). It isn't a medication and can be found at health food stores.

Amber had some blood drawn today. She didn't cry. She has a high tolerance for pain. That's why I freak out when she does cry.

We have a tentative September 1 appointment in Texas, but they are going to try to get us in sooner so I am just waiting to hear. Dr. Glaze's nurse, Judy, is absolutely wonderful and will coordinate all the appointments for me so I don't have to call each doctor's office myself. That is a real help to me.

Thank you everyone for your guestbook entries! So cool to know people are rooting for Amber. Miss Kristin, do you tell your whole family about our Amber! Thanks for their words of encouragement.

I am so elated she is happy again. I guess it takes some bad times to help you appreciate even more the good times. Her giggles and smiles and laughs are back and we are all just drinking it in. I get choked up just thinking about how awful it was to see her go through so much. Will continue to keep you posted. Just know that things are going well if I don't write for awhile.

Monday, June 12, 2006 2:18 PM EST

Amber is doing so-so. Saturday was bad & Sunday was the worst. She cried Sunday at least every 30 minutes. Then she would get happy & excited, probably swallow some more air & then the cycle began again. Yesterday afternoon I decided to leave her g-tube open. I hook her extension & syringe up to it & then either pin it to the chair she is sitting in our rig it up to her wheelchair. Grandpa gave us this idea, but I figured it would be a messy situation so I didn't try it before. Sometimes it does become a mess because it overflows, but it definitely is helping her get the air out. She will cry, we hear gurgling (the air coming out) & then she is fine for 15 minutes if we are lucky. At night when she is sleeping there is no need to do this. Hope this makes sense. I will try to take a picture of it & post the next time. She is doing better today, but still having lots of air. So far today she has only cried four times.

We saw Dr. Fay today & she has ordered blood tests & some more stool tests. We are trying to see how she is digesting her food and also if she is having an intolerance to her Pedia Sure. Also, Dr. Fay said she will contact Texas. She did tell me we may have to always have Amber's g-tube open. Oh dear, I sure hope not. It is quite a pain and not easy to move her. I know of one other girl in Michigan who has to have her tube open all the time. I spoke with her mother yesterday and she gave me alot of helpful advice.

We are now giving Amber the Miralax & will start Metamucil. We are also going to start her on something called Florastov. I heard about this from another mom in NJ & Dr. Fay said it was ok.

I plan on talking to Texas today to find out our appointment dates.

Thank you everyone for checking on us. It has been a rough couple of days. I think I have cried every bit as much as Amber. The mother from Michigan said it well for me. "It's hard to watch your child be in pain and not be able to do anything about it. But even worse is when the doctors tell you they can't do anything for you either. It's at that time you lose all hope." Well, I have hope now. I pray for Amber that she can just be happy. That's all I ask for anymore. If she is out of pain, she is happy. Today she got three immunization shots and didn't cry at all. That tells me her pain from this air is very real.

Friday, June 9, 2006 7:01 AM EST

I wish I could say Amber is doing better. I never know what each hour will bring. She is up and down. When she cries, she is in pain. We were on our way to PPC (special day care) yesterday and she had been crying for a good part of two hours. All of a sudden I took a turn and headed for the hospital. I had had enough. I had made a call to the GI doctor already that morning and no one seemed too concern. Their last instructions to me were to see her primary care physician to have her thoroughly checked out. There was nothing more they could do for us and the doctor didn't want to "put her through another round of x-rays" to see if her bowels were impacted. So on the way to the hospital I called again and told them where we were going. The nurse said she would let the doctor know. Like I said, no one seems too concerned.

The ER doctor couldn't have been more helpful or nicer. There is so much to tell but I will try to make this short. He saw lots of air in her bowels from her x-ray ten days ago. She is not impacted now. They did do an x-ray of the bowels like I asked. It only takes two seconds so I am still scratching my head as to why our GI doc didn't want to "put her through it", but he would rather let her cry for days on end. I think our GI doctor and his staff has written me off as the crazy mother. The ER doctor let me know he knows very little about Rett Syndrome. So again we were sent home from the ER with no answers. I started crying and then I remembered I hadn't contacted the doctors in Houston. The ER doctor said that is the route we have to go. I told him I couldn't afford it and he said we need to do Angel Flight. They provide free air travel for medical appts. So we got to talking and he got me information on it. He said he is a pilot, but has never joined Angel Flight, but has been meaning to.

So yesterday I called the docs in Houston and was able to talk to the head nurse who is absolutely wonderful. It has been 1 1/2 years since we have seen them so I knew by calling they will not advise over the phone. I guess that is why I didn't call sooner. She was able to give me some helpful advice off the record. Also, their docs are more than willing to talk to the docs here, just not me until Amber is seen there again. On Monday we will have a definite appointment date for our Houston appts. The very bad news is they can't get us in for months. I am so disappointed.

I still don't know what is wrong with Amber. The nurse in Houston was astonished Amber was on so many meds. So I am taking matters into my own hands and laying off some of this stuff and experiment with what works. Amber does seem to get some relief if we "vent" her g-tube each and every time she cries. The ER doc suggested with all the air in her bowels, "venting" her isn't going to get that air that is farther down in her bowels. We are only getting the air out of her stomach. My hope is that if I vent her at the first sign of pain, it will help eliminate it going to her bowels.

I have lots of calls to make today. I have to get the x-ray reports, stool reports, etc. Then I will fax them to Houston. The docs there will look at them and then consult with our Pediatrician here IF she calls them. At this point the GI doc is out of the picture. I am beyond pissed at how things have gone over the last couple weeks. He hasn't even physically examined Amber in the last month! We have an appt. with her Pediatrician on Monday and she is the person I am hoping can help us and be in contact with the docs in Houston.

I am very discouraged right now. I do find some comfort in talking to the nurse in Houston. She is VERY knowledgeable and is steering us in the right direction. I have to keep a diary of everything we do from here on out. Tylenol with Codeine no longer helps Amber. When she cries now, there is nothing I have for her. All I can do is vent her. It seemed to help yesterday and I am hoping that will continue. She has had wonderful days, but I just never know when that will be. The bad days are so bad that I can hardly handle it. How do you watch your child cry and do nothing about it?

While at the ER, Amber had a bowel movement with the doctor in the room so he was able to see how she handles it. Also, they were able to take samples and do tests. Possibly I am thinking the BMs are helping her get the air out, not just stool.

I guess I have no clue what is going on at this point. I am just trying to keep Amber happy. When she is without pain, she is giggling and laughing. It is a wonderful sight.

Thanks for visiting us. Will try to continue to keep you posted.

Tuesday, June 6, 2006 7:34 AM EST

I am almost afraid to say it, but Amber seems to be doing better. She is still not completely back to normal. If today isn't a good day, I will take her to get an x-ray of her bowels again. She seems to be sleeping so much lately. Yesterday she only had about three crying spells where I thought she was in pain.

Last night at Jay's baseball game, a little boy came up to me and asked if he could talk to Amber. Amber was laying on a blanket in the grass. How sweet was that! I wanted to ask this boy all sorts of questions like what made him want to talk to Amber! But then, of course, that would ruin the moment. I told him her name is Amber. Then he asked if she broke her arm because of her arm splints and I explained why we use them to keep her hands out of her mouth. So he talked to her awhile and then ran off to play. Some kids seem to be drawn to Amber and I always wonder what makes them so sensitive to her. Yeah, I think too much!

Anyway, Amber got some new arm splints. They are a little different. I thought I would try them out since the others work, but she does manage to get them off often.

I am glad to say I don't have much to tell.

Thanks for stopping by!

Thursday, June 1, 2006 12:53 PM EST

Amber went a couple times this morning, but is still having crying spells. I have been in contact with the doctor and we are going to give her enemas every day for five days and also Milk of Magnesia, in addition to the increased dosage of Miralax. My poor baby! I told them I won't let her cry all day and will take her to the ER if it gets too bad.

Sorry I keep talking about such a stinky subject. It is our main conversation around here! Instead of "How was your day?" it's "Did she poop?"

Have a good one!


Wednesday, May 31, 2006 9:52 PM EST

Oh my gosh why would I even bother saying Amber is doing great. Right after I last wrote (this morning) she started crying and she very seldom stopped the entire day. I had given her every medicine imaginable, suppository, went for car rides, then called the doc. We ended up in the ER by 5:30 this evening. We were out by 8pm. They did an x-ray of her bowels and tested for a UTI. The doctor said she had "excessive stool" in her. So they sent us home with instructions to give her Miralax twice a day instead of once. So nothing has changed other than she is completely exhausted from the crying and I am hoping she will sleep through the night and wake up with a mini-explosion. I feel better just knowing we at least know part, if not all, of her problem.

I feel so bad for Amber. She cries this deep cry with lots and lots of tears. She was so sad today. When they put a catheter in her she was smiling. I know she has a high tolerance for pain so when she is crying I know it is unbearable.

I am exhausted so off to bed. Just wanted to update. Thanks for checking!

Wednesday, May 31, 2006 7:37 AM EST

FINALLY Amber is doing better. The acid reflux AND bowel problems were the reason. The medication for the bowels definitely seems to help. The double dose of Prevacid also seems to be working. I am so relieved. It is just awful to see her in pain. She is now so alert and happy. If there is any crying, it doesn't last long at all.

Amber is going to PPC (her special day care) three days a week now. It is nice not having to take her to school in the middle of the day and then have to pick her up. So right now everything seems to have calmed down and we are enjoying the weather.

It is so wonderful to have our happy girl back. Just wanted to let you all know.

Monday, May 29, 2006 6:28 AM EST

Amber had a fabulous day yesterday. I honestly still don't know what is going on. I hope the happiness can continue. But my experience is as soon as I say she is doing well on her website, she goes downhill.



Wednesday was Amber's class picnic. Here Mariah went up to get Amber's paperwork.



Here is Amber with her teacher, Mrs. France, (blue shirt), Miss Judy (green shirt) and her 1:1 aide Miss Sandy (pink shirt). We will miss them all dearly as Amber will be going to another school next year. We promised to come back and visit.



Amber sitting with her certificate.



On Thursday we went to Cedar Point. I was actually able to get three free tickets! How cool is that! I was already getting two and when waiting in line to pay for the additional ones, a woman asked if anyone needed a ticket as she had an extra one! I snagged that one quick!!



Here is Amber with Daddy & Mariah. Daddy LOVED this ride. It spun round and round and up and down. Amber did exceptionally well that day. She absolutely would not take a nap until we left at around 6pm. I couldn't believe she was able to stay up the entire day in the sun and getting on and off the rides. It started raining really hard at the end and we got soaked. At one point, Amber started really giggling. She was having a blast getting all wet.

Saturday we went horseback riding. When putting her up on the horse, there is a stepping block. As the woman was putting her on, he bucked her and spun around!!!!!!!!! The woman actually fell forward and landed on her knees with Amber still in her arms. Whew! That really freaked us all out. Horses can certainly be unpredictable. He wasn't about to let Amber on. Needless to say they got her another horse. I think that one was a little spooked because someone (not experienced with horses) was trying to push him closer to the stepping block and he didn't want to.



Not sure if you can see it well, but here is a picture of Amber's hands with the rash. This is what it looked like on her face and feet also. Notice how the rash stops at her knuckles. We stopped the med on Friday. We have now started a new med for a possible bowel infection. It is called Metronidazole Suspension. This will only be taken for 7 days. So there was no impaction of her bowels, but this is what the doc decided to do next. I really believe she is having acid reflux in addition to the bowel problems. They are all tied in together. When one is really aggravated, the other probably is too. I have doubled her reflux medicine, which seems to have helped, but not enough. So tomorrow I will ask the doctor what we can do about that. I am still wondering if her fundo wrap has come undone. On Saturday morning Amber actually gagged right after being fed, then she cried off and on most of the morning. That is a sure sign of reflux. I finally gave her our good old Tylenol when she became hysterical and she stopped crying within two minutes! The miracle drug! Problem is, it causes her to be constipated. So hopefully we will get this all right very soon. At least I feel I am on the right track in figuring out what is going on.

Thanks you guys for checking on us. It really is wonderful to know people still visit her site.

Wednesday, May 24, 2006 4:59 PM EST

Amber is still doing just ok. I don't know what is wrong and it is very frustrating. She has these bouts of crying and I think it is from some sort of pain. I think it is cramping. This is all such a guessing game. Today we got an x-ray of her bowels. I haven't found out the results yet. Next we are going to test for a urinary tract infection. I have to say she is doing better, but not good. We are continuing the med that makes her drowsy and causes her face, hands & feet to break out. I am hoping it is because of this med that Amber is only crying part of the time instead of all of the time.

Something else I am noticing, Amber seems to be crying soon after she has been fed through her g-tube. I am just realizing this. Is she having reflux problems again? I gave her a double dose of her reflux medicine today. I wonder if her fundo surgery could have come un-done?? That will be something else I will check into. It isn't likely, but it can happen.

Yesterday we were able to meet Sarina.

www.caringbridge.org/pa/sarina_d/



She saw a doctor here in Toledo so we were able to meet up. Unfortunately Amber started crying soon after we got there. Just when I thought we would have to leave, she calmed down. So we were able to visit.



It is so cool to email someone & read about them and then finally actually meet. Sarina is such a mature girl that I feel is going through SO much. I can't imagine what she endures on a daily basis and to only be 17 years old. I didn't feel like we really got to talk because of Amber crying & the other kids being there. Needless to say, I was a little stressed, which seems to be the norm for me anymore. Her dad took the pictures and even got the kids some pop. How nice! Anyway, I hope we can get together again when you come back to Toledo Sarina!

Amber had her class picnic today. I will update with pictures later. We are going to Cedar Point tomorrow and I just wanted to give a quick update.

Thanks everyone for seeing how Amber is doing.

Monday, May 22, 2006 10:07 PM EST

Well, today was a little different. Amber was just ok this morning. By 10am she was asleep & didn't wake up until 2pm!! She had a rash on her feet, hands & face only. She had only taken her second dose of the new medicine so I called the doctor. I haven't heard back from them, but talked to the nurse for awhile. I told her I still wanted to give this med a try because today for the first time in awhile she pooped without crying! When she woke up she was very happy. She went a couple more times today and this evening and never cried!! This hasn't happened in a long time. So I gave her another dose of the medicine this evening. I know it makes her extremely tired. Tomorrow I will try to give it to her the minute she wakes up so she doesn't sleep the entire day away. This med is an antihistimine, but the doctor wanted to try it because it is known to help block pain. I honestly didn't think it was going to work, but I love how today went, minus the rash & sleeping. So I am hoping for a better day tomorrow. The rash did eventually go away and then seemed to come back later this evening, then went away again. Makes no sense to me!

Tomorrow is Amber's last day of school! She had to miss today because I wasn't sure what was going on with the sleep and rash. I figured she was sick. On Wednesday we will go to a picnic with her class.

I was able to meet with the two service coordinators today. We will be getting the waiver starting in July. It is a really good one. It will help us get a ramp, modify our bathroom and get a lift for our van, among other things. Unfortunately, it does not help with things like adding on to our house. Also, they won't put a lift in our van because it is too old and has too many miles. Sooooo I suppose we will have to get a new van at some point. Not exactly what I want since we have only three car payments left! I would love to go for awhile with none.

Thursday we are going to Cedar Point. We were able to get some free & discounted tickets through the ARC of Ohio. We are surprising the kids. They don't have a clue! Should be good weather & fun!

Thanks everyone for checking in. I really do appreciate it. I know some of you never sign the guestbook, but do check our site.

Sunday, May 21, 2006 8:18 PM EST

About an hour or two after I last wrote, Amber started crying and hasn't been the same ever since. So much for the happy streak.

I just don't know what is going on with her. It is so frustrating and so agonizing to see her unhappy and/or in pain. There are some times she is in serious pain and other times she is just plain old sad. I keep trying different meds, different things, massaging her, playing music, called the doc. I just don't know what to do for her. She doesn't wake me up at night, but I know she doesn't sleep all night. Thursday I had to pick her up from school because of her crying. Friday she went to PPC (day care) and they said she was fine, but Grandma brought her home and said she cried the whole way home. Then she wasn't very happy the rest of the night. What is going on? Also, she had a slight temp on Fri of 99, but PPC says she was happy??? Sometimes I feel I'm losing it and I can't think straight. There are periods of her being happy, but not many. I suppose I will take her to the doctor tomorrow if she doesn't get better.

Will keep you posted.

Thursday, May 18, 2006 8:13 AM EST

Amber is on a happy streak again. She is hilarious. I was able to video tape her with daddy last night. She was giggling and laughing at him. He was trying to "eat" her feet and she loved it. Her poop situation has improved again.

Last night were Amber's awards at church for her Wednesday night class. She stood up in front of everyone with Miss Kristin. She was very loud and happy. It was so cute. Unfortunately, I used my other camera, (not my digital) so I will have to post a picture later if they turned out.

Monday we saw the neurologist. He is a little concerned about her getting generic seizure medicine now. He said to keep a close watch on her. He explained how generic really is a little different then the real thing (news to me). And when it comes to seizure medicine, we need it to be just about perfect. On Sunday she stopped breathing twice and turned purple. Maybe because of seizures? It is so hard to tell sometimes. It could have just been Amber being Amber.

On Tuesday the service coordinator came out. It was a very informative meeting. She will be meeting with us on Monday when we meet with a different service coordinator. We will all make sure Amber is getting all the services she can. These women work for two different agencies, one is the Board of Mental Retardation and the other is for Job and Family Services for the state. It is all very confusing, but I'm learning!

I found a pamphlet at our local municipal building about funding to help people fix up their homes so they are up to code. One of the things they help with are "ramps and other accessibility improvements". So I called and they are sending me out an application. That is exciting that I found that!

Yesterday we had Amber's AFOs looked at. We pick them up today. They are being lengthened and molded a little better to her feet.

Also, yesterday we had to reapply for Amber's waiver. I will learn more about this waiver on Monday, but it sounds like Amber is going to get alot of help in the future. We are on this long waiting list, but it is sounding hopeful that changes are being made in the next year and we will be getting more help, especially a lift for our van.

Our appt. was changed to today for her wheelchair fitting. She is getting a new harness/seat belt for her chair. It will hold her up better.

Also, our PT is ordering arm things (for lack of a better word) that will go on Amber's walker. They will allow her to lean when using her walker. Hard to explain, but I will show a picture when we get them. She seems to be able to walk better with them at her therapy. I am excited for Amber to walk. I really believe it is going to happen more than ever. It will never be easy for her, but with help, I believe she can do it.

Her last day of school is next week. They are having a picnic. I will be sure to take lots of pics.

Saturday, May 13, 2006 8:00 PM EST

The medicine Amber is taking for cramping is Bentyl. We called the doctor last week since it didn't seem to be working. So he doubled the dosage. I still don't know if it is working. She does seem to be doing ok, but usually has crying spells in the morning. I don't want to use this stuff three times a day like we're supposed to. I did give it to her when she started crying this morning and it seemed to help. So I guess I will have to try it a little longer. I have heard from other mothers they use it on an "as needed" basis. That is what I would like to do. We also had a bunch of tests done on her stool again.

Last week we went to COSI. It is a scientific type of "hands on" place.



Amber especially enjoyed playing in the water.



She also got to play in the maternity area.



Here she is making a bunch of noise.



Tori is helping her make some noise.



The weather has been real nice lately until the last few days. This is a special bike we got from another family. Jay loves to drive Amber all over.



He goes quite fast and Amber loves it!



Today we went to Cleveland for a "bench dedication" in honor of Aunt Barb. It was such an awesome event. A bunch of Aunt Barb's neighbors from her old neighborhood chipped in together to get this bench. It is positioned right on the beach where Aunt Barb used to go sailboarding. We had such a nice time with everyone telling awesome stories about Aunt Barb. It started out a little emotional, and then some decided to tell some of the funny times with her. Gosh was it so refreshing to hear the silly things about her. It was so uplifting. There was money left over from the bench and it went to the Rett Syndrome Assoc. That is so great!



Afterwards we went back to her and Uncle Disch's house for a fabulous catered meal. Yum! It was great to get together with everyone again. We also had birthday cake for Aunt Barb, my mom's and Karl's birthday today. It is still so hard to believe she is no longer with us. But the bench dedication was such a positive experience and again reminds me of how special she was. I was able to go through some of her clothes and take a few things home. Not many since we aren't the same size! It was nice that my girls were each able to get something, whether it was some chapstick or a purse to remember her by.

Next week is a busy week. We meet with a service coordinator. I called to find out if we had one (heard from another Rett mom when we went to Lansing a couple weeks ago that we should have one). Well, I was told that no one found a need for us to have one! So again thanks to another mom, we may be getting some more help. It is unfortunate that I am always seeking and searching for help that is out there, but no one ever wants to volunteer any information. We will also be meeting with someone about our waiver. The waiver is the one that can possibly help us with home modifications and a lift for our van. We also see the neurologist, the orthotics guy, the wheelchair guy, and speech therapist.

Jay's team for Bible Quiz Regionals came in 13th place out of 21 teams. They did an awesome job and it was a very stressful couple of days. They really should have made it to Nationals, but were making quite a few mistakes on the second day. Jay came in 11th place individually out of about 100 kids. We are very proud of him!



We took the kitten with us to Cleveland as he is still on a bottle. My cousin (Aunt Barb's son) and his wife had to put their cat to sleep on Friday so guess who has him now! His new home is in New York.

Thanks as always for visiting us!

Wednesday, May 3, 2006 8:00 AM EST

Our Rett gathering was great. I enjoyed hanging out at a VERY nice hotel. I knew I was going to enjoy myself when we walked in and saw they served Starbucks coffee. That did it for me. They had a large pool, basketball court and hockey table. Really, we just visited with other families. Very relaxed. The kids had a blast swimming and Jay enjoyed playing basketball most of the time with some kids he met there. So here are some of the families we met.



This is Jodi and her daughter. They live in Toledo. This is the first woman to come and see me when she heard Amber might have RS. She loaned me her RS handbook and just came and visited with me. This was in the very beginning when I was somewhat in shock. Her daughter lives in a home. Her daughter used to be able to walk.



This is a family that lives in Michigan. Their daughter was just diagnosed last year and is three years old. Their daughter walks great.



This is another family from Michigan.



This is another family from Michigan. Their daughter also walks. Unfortunately, I didn't get the husband's picture. He was very kind, very smart (I think he is a scientist or something like that) and he is on the board of IRSA.



This is another family that lives in northern Michigan.



Now this is a boy, Nate, who is 20 years old and was just diagnosed 1 1/2 years ago. I talked to his mom quite a bit and learned alot from her. She is something. This woman is petite and she lifts Nate and does everything for him all by herself. Nate is adopted and she didn't know there was anything wrong with him, other then just being a little delayed. He was adopted when he was two years old. Nate is able to communicate with yes and no signs. There are very few boys that have RS, but we are finding more and more.



This is Kristen who organized the whole shin-dig. I started communicating with Kristen online a few years ago and then met her at the Baltimore RS conference. We have kept in contact ever since by phone and email. She lives in Lansing. Her daughter, Kylie, is able to walk and just plain old fun to watch. Watching Kylie gives me hope. Kylie didn't show hardly any signs of RS until two years old!!! She could feed herself, take off her clothes, walk. Is that amazing or what! Kylie still walks great and can even walk up steps!



And this is Skylar and her mom. They live in Toledo and Skylar is Amber's best friend. www.caringbridge.org/oh/skylarbaker



Amber and Skylar visiting.

Amber was beyond happy over the weekend. She giggled and laughed. She really enjoyed herself. She stayed up late Saturday night and was still happy the next day. Then on the way home, she didn't even fall asleep! It was a two hour drive. She was definitely wound up from the weekend.

For some reason I totally forgot to tell these people we have a website! The visit was uplifting and discouraging all at the same time. Some of the girls were doing so well, and others not so well. Every girl is different. (And I should say boy too.) So I do have hope. I am confident Amber is going to walk with assistance. She is improving every year. It is just a slow process. I realize more and more that therapy and keeping her moving is imperative at this point in her life. I now put her in her walker each morning right after getting her dressed. She is able to stand in it and move around more.

On Monday we saw the GI doctor. He prescribed something for Amber for the pain she has been going through to poop. I still don't have it as the pharmacy is going through menopause again. (That was a joke.) Also, they don't even have Amber's seizure medicine available and are contacting the doctor about it. (For what??) The woman didn't seem to know what was going on when I went to pick up the scripts and there were six people behind me so I thought it best I put up a fuss over the phone, so I will call today. I was very happy with the doctor visit. This is our new GI doctor and I am thankful he takes me seriously. I was afraid he was going to tell me there was nothing more he could do (like the other doctor would have said). He said if this med doesn't work, he has other ideas. I think the med is for lessening the cramping in her stomach. I will research it once I get my hands on it!

This weekend Jay has his big Regional competition for Junior Bible Quiz. We are so proud of him and pray his team does well.

Amber's last day of school is 5/24! Hard to believe. She will be attending her special day care for the summer. It will be 3-4 days a week. I haven't decided yet. Gas prices have alot to do with my decision! She could go 5 days if I wanted.

Sorry Caringbridge friends for not visiting lately. I will soon! Thanks everyone for stopping by.

Thursday, April 27, 2006 7:41 AM EST

I never know what to expect each day from Amber. She usually wakes up giggling and very excited and within an hour she is crying. The poop problem is out of control. I will call the GI doctor today. She has been having blowouts lately when she finally does go. There is no warning and all of the sudden it is all over the place. Makes me a little nervous taking her anywhere. I have even lowered the dosage of her medicine. This is the same med that was working so well and I am quite certain will continue to work well once we get the right dosage figured out. I think she needs some other kind of help though. This is ridiculous to have her in pain each and every day for even a small amount of time. This is the same kid that no longer cries when getting a shot or has blood drawn. So I know her pain tolerance is high. Her gas pains must hurt terrible.

Equipped Kids returned my call and are allowing me to keep her Pony Walker for at least another six months. Yippee! I have to take it to them on Monday to "look it over" and then I get it back. So Amber will have a walker at school and one at home.

I have been real bad about the water therapy. I can't seem to get us there. I am going to try something different and just go to open swim at the YMCA with all the kids so we can all benefit. I pretty much know what to do with Amber in the water and this would be a great way for me to actually do something with all the kids.

Well, Amber's tray will be brought to us in Bowling Green next weekend. I was able to get hold of the man in charge of Bible Quiz and he will bring it to me. How awesome is that! I was so relieved to hear he could help us out. Now let's see if I can quit forgetting things....

Amber has been eating mandarin oranges out of the can really really really well! You would never know she has an eating problem when it comes to them. She also likes strawberries alot. That's another thing, I am wondering if the mandarin oranges are causing her big blowouts, thus the need to lower her meds even more. I will keep experimenting.

Some of you might remember me having a little temper tantrum about the guy who owes us money quite awhile back. I thought I might update you on the latest. He never did pay and we are still struggling. But I really feel the Lord working in our lives to change our ways and I see good coming out of this. Lots of good. First and foremost, I have totally let go of my anger towards this man and forgiven him. This is only by the grace of God that I am able to do this. I know he must live in his own private hell to be such a nasty person. There have been hearings and meetings and I won't bore you with the details. What is probably going to happen, and happen soon, is we will go in with all the other contractors he hasn't paid, into one big lawsuit against the man. We will all split the legal costs evenly. We don't want to do this, but it is probably the only way. Some of the other contractors did some things wrong and we only had one small, very minor, thing wrong. There will eventually be a settlement and we will all get a percentage based on what he owes. We are trying to get the guy to settle with us separately from everyone else, but he has informed all involved that "no one will get one cent from me". Ha! We have a lien on his house and he wants it off, so we will see. As time goes on, the man is making himself look more and more ridiculous to the judge and all involved. He has discriminated against women and people of color and has just been WRONG in his dealings with people. I feel sorry for his attorney who I am quite certain doesn't enjoy representing him.

Jesus said, "When you stand praying, if you hold anything against anyone, forgive him, so that your Father in heaven may forgive you your sins."
Mark 11:25

All in all, Amber is extremely happy, other than when she is having her pooping problems.

Next time I will have lots of pictures from our RS gathering this weekend! Thank you all so much for taking an interest in Amber. So many of you tell me you have read her website and I am surprised at how many of you there are. You don't all sign the guestbook! If you have never signed it, please do so. I just love to see who is out there.

Oh! One more thing. Last week I showed Amber her website, which I haven't done for awhile. When her picture popped up on the computer, she laughed a big belly laugh. It was soooooo cute!

Monday, April 24, 2006 7:52 AM EST

I got Amber's shoes back. My mom left after us in Cincci and she was able to bring them back. Whew! Now on to the next thing I have managed to lose.....Over the weekend we went to our State Pee Wee Bible Quiz. Amber had a rough time after lunch. I couldn't get her to stop crying. I took her tray off her wheelchair to change her diaper in the bathroom. I didn't remember I had left it there until after we got home. So now I have to make some calls. It is about three hours away. I wish I could quit forgetting things. I try so hard and still manage to always forget something.

After lunch on Saturday, Mariah and Amber were both crying so I took them for a car ride. This was while the quizzing was still going on. (Needless to say, I didn't see Tori quiz much.) Mariah fell asleep, but not Amber. She was actually shrieking. I know she was in bad pain. I stopped and gave her Tylenol with Codeine, which always helps, but not this time. I gave her another dose and it calmed her a little, but not totally. I was starting to panic and after almost two hours I got Karl since the matches were over and we got her shoes and pants off and laid her in the front seat of the van. She finally calmed down. Through all this, I vented her g-tube quite a few times and she had LOTS of air in her belly.



Their team came in fourth place. Daddy (Karl) has decided to take over being in charge of Pee Wee Bible Quiz. He told me in the parking lot at the state match. I told him this chick is being his HELPER only as I know my limits and can't take on another thing. I am proud of him anyway to want to do this.

Our service coordinator called again and said there is another option for Amber's therapies, at least for the summer. She is trying so hard to help me. Amber will be going to PPC (special day care) and she could receive her therapies there. Sounds great to me! So I have to check into all this and make sure she can still receive her speech outpatient. Hopefully it will all work out and save me lots of time.

Amber really has been having a rough time for over a week now. She is in and out of happiness. I think the problem is her bowels. I took a big chance last night and didn't give her any of her constipation medicine. I think it is giving her cramping. I will start it back up tonight. I hope we can get this under control or I am going to take her back to the GI doctor.



I have been trying to keep her upright as much as possible in the hopes that it will help her. This is a small amount of time where she was happy yesterday.



It is getting so frustrating to not know how to help her. Yesterday I noticed her lips were unusually red. Of course, they were chapped, so I have started putting chap stick on her lips each time I change her diaper.

I was sick last week for a couple days with a cold and flu-like symptoms. I imagine that is also what Amber has been going through in addition to her bowel problems.



Don't laugh, but that same stray cat had four more babies and abandoned one. Meet the new member of our family. This one WILL be living outside.

We go to Michigan for our RS get-together this weekend. I can't wait. I will be sure and post lots of pictures when we get back!

Tuesday, April 18, 2006 9:54 AM EST

I got news yesterday that we either have to have all our therapies in the home or all out of the home. Not a combination. Insurance calls the shots. This puts me in a dilemma because I don't want to leave Amber's speech therapist. She is that good. She is really helping Amber communicate. So I guess I have to pass on the in home therapies. Bummer. Also, she will be getting therapy in school next year, as she does now.



Here are the kids Easter baskets. Amber didn't have a very good Easter. She had a cold and was very cranky. I gave her medicine and she slept or whined alot.



Easter evening we finally colored eggs. (I was a little behind this year).



On Saturday, Grandpa took Jay and Karl fishing. Here Amber is looking at the fish Karl caught.

Monday morning Amber woke up happy and is now back to normal. She just doesn't do well when she gets out of her routine. The cold didn't help either. Thanks for stopping by friends and family!

Tuesday, April 11, 2006 8:05 PM EST

Friday night it was kids against the parents for Pee Wee Bible Quiz. The kids also got their t-shirts that they will be wearing to the state competition this month. Before they passed out shirts, they said they were doing something a little different this year and does everyone know the Heiss Family. Everything gets a little fuzzy for me after this. I was in such shock. It was decided Pee Wee Bible Quiz would be in honor of our family this year (really in honor of Amber) and that gave them the idea for the shirts. I was told it was our pastor's wife's idea. It was really quite exciting and very emotional for me. I guess our church is going to help make a video to send in to Extreme Home Makeover. This will be our second one we have sent in. I really don't know much else. It was all so overwhelming and I don't think I have ever been so surprised in my whole life!



So our whole family got a shirt, plus all the kids on all the bible quiz teams will be wearing these shirts. How cool is that!



So we feel very loved and blessed to belong to such a wonderful church family!

While trying to take Amber's picture with her shirt on, she started making a funny noise. This is the picture I took.



Amber had stopped breathing and her lips were actually turning purple. They have told me she has done this a few times at school, but I haven't seen it at home until now. (Except for it happening about a year ago.) It really is quite a sight. The noise sounded like she was trying to swallow, but wasn't able. Right before she did this she was shaking real bad. I have to wonder if it was a seizure, but it's not like any seizures she has ever had before. Breath holding is quite normal for girls with RS, even to the point of turning blue.

We visited friends and family in Cincinnati over the weekend and I think I left Amber's shoes there. This is pretty major because they are the only shoes her AFOs can fit into. Argggg!

Thanks for checking on us. Sorry to my Caringbridge friends that I haven't checked in for awhile, but plan on catching up in the next couple days. Also, if Emily's mom in Florida could please email me your password, I would love to access your site again since I forgot the password!

It was a year ago this month Amber had her g-tube put in!

Everyone have a great Easter!

Friday, March 31, 2006 11:07 AM EST

Yesterday was a beeeutiful day here. Nice, warm and sunny. Amber went outside with Jay for awhile. She sat in her wheelchair watching him shoot hoops. Then he pushed her over by the picnic table and sat and talked with her for awhile. I had the kitchen window open over the sink and although I wasn't able to hear what he was saying, he was talking to her. He was adjusting her socks, kissing her once in awhile and just being so tender. It warmed my heart to see that.



Then he called for me to help him put her in a swing so he could push her. I can't believe the good that Amber brings out in all my kids. They are so tender and loving with her. I know she will know everyone's secrets as they years go by.

Amber's transition meeting to Kindergarten went very well. She will be going to a special needs classroom next year, five days a week, all day. She will also participate in art, music and gym with her typical peers. She will also have a 1:1 aide. I really didn't get much of a fight on that one, so everything couldn't have worked out better. Her IEP (Individual Education Plan) will be May 3 to finalize everything.

I kept Amber home from school yesterday. She fell asleep about 9:30am and didn't wake up until 2:30pm!!!!!!!!!!! I figured she was coming down with something, but then I realized the reason I didn't sleep well the night before was probably because Amber didn't sleep and kept waking me up, thus the need for her to take a five hour nap!

Today is the one year anniversary of Terrie Schindler Schiavo's death by starvation.

Tuesday, March 28, 2006 10:34 AM EST

Gosh have we been busy. I keep wanting to update and never seem to find the time. I imagine I will be updating less and less as the weather gets warmer.

I have decided to take a break from some of Amber's therapies for awhile. I am running around so much with her and the other kids functions that I never seem to be home and life is just too crazy! In April we will be gone three weekends out of town for various functions. The weekend of April 29 we will be traveling to Lansing, Michigan, for a Rett Syndrome get-away. We will just be hanging out by the pool with other RS families. I can't wait. We will be meeting up with a couple families we met at the RS conference in Baltimore, Maryland, a couple years ago. We have kept in touch and I am excited to see them again. Also, we never met their daughters at the conference, but we will get to meet them this time. Amber's friend, Skylar, will also be going. I will be sure to take lots of pictures.

Amber's EEG came back the same as before. Which tells me it isn't "normal", but normal for Amber. I haven't seen any seizures. Sometimes she does start shaking like crazy, but that's about it.

Jay and Hayley went to our state bible quiz competition a few weeks ago in Parma, Ohio. Jay's team is moving on to Regionals! We are so excited for him. We are really practicing. The hope is that his team will go on to Nationals. This is a very competitive competition and somewhat stressful for all involved (especially the parents!) The competition is the first weekend in May and will be held in Bowling Green, which isn't too far away. Yippee! We will get to sleep in our own beds, which will help us tremendously to be well rested.

I received a call that Amber's waiver program will be discontinued in June. The good news is she will be getting a better waiver. I will find out more during a home visit in May, but I was told it will cover home modifications and a lift for our van. YIPPEE!! This is big news. Then I was told we have to prove everything is medically necessary. Now what the heck does that mean? We WILL find a way. I most certainly don't want a lift on my van or a ramp to the house for the fun of it. I can't wait to hear what medically necessary really means.....

Our transition meeting is tomorrow to make plans for Amber's schooling next year. Will keep you posted.

Wednesday, March 15, 2006 2:31 PM EST

Hi Friends!

Amber is doing great, but she has her days. Last night she woke up at 3am and never went back to sleep until 8am!! So needless to say, we didn't get alot of sleep last night. She is very noisy. She is talking in her own language and letting me know I should get up and party with her. Thank goodness she doesn't disrupt the girls too much. They are quite heavy sleepers. At 5am I put her downstairs in front of the tv, but she was still noisy.

Amber has started lifting her legs as we try to walk her. I didn't realize she was doing this until they showed me at school. I am so impressed with how well she is doing.



Amber got her car seat. The people were great and put it in for me. Then they even checked Mariah's car seat and readjusted it so it was in properly.

We went to water therapy on Monday. Amber LOVED it. The water was so warm. We are going to try and go every other week.

Amber's levels are high for her seizure medication, but that's ok. She is doing well and we haven't seen anymore seizures. Her levels are at 65, normal is 35, and last time hers were 53. She is acting fine so we are going to leave everything alone for the time-being. I still don't know the results of the EEG.

Amber's transition meeting is March 29. I am curious to see how it will all turn out and how many people will go for her having an aide and how much of a battle it will be for me.



Here is a picture of Amber hanging out with her sisters.

Thanks for stopping by! Some of our caringbridge friends have a password to get on their sites. If you have a password, could you please email it to me?? I am unable to get on a few sites. I forgot the passwords!

Sunday, March 5, 2006 3:44 PM EST

Hi everyone. I have been sooooo busy. I haven't had time to update. Amber has had good and bad days. Today was extremely good. She has giggled and squealed alot today. She has also had alot of BMs going on. Need I say more.

We think Amber has been having seizures once in awhile. Last Wednesday she had an EEG done and she has also had her levels checked. So I should find something out this week.

Amber had no cavities at the dentist. She grinds her teeth quite a bit. Her two front teeth are showing quite a bit of wear. We aren't going to do anything about it right now. The dentist says we will hope she stops the grinding as she grows older. She does this when she is awake, not asleep. We just love our dentist. He sees lots of kids with special needs. The dentist gives Amber sunglasses to wear during the visit because of the bright lights.

We pick up her new car seat tomorrow. We weren't able to go to our first water therapy as a child had an "accident" in the pool. Hopefully we can go this month. Amber has started Occupational Therapy in conjunction with her Physical Therapy. We have started letting her feed herself, which is a messy situation, but she enjoys it and does quite well. I just give her some crackers or even candy to motivate her.

Nothing else going on around here. Thanks for checking in.

Thursday, February 23, 2006 2:31 PM EST

Amber has had a terrible day today and alot is going on with our family right now. I think she needs to poo and we are working on it. She is finally sleeping after a day of crying.

I came across this and liked it so much I had to share. It is by Rick Warren, author of The Purpose Driven Life. If you haven't read the book, I encourage you to do so. It helps me understand all that keeps happening in my life.

People ask me, What is the purpose of life?
And I respond: In a nutshell, life is preparation for eternity.
We were made to last forever,
and God wants us to be with Him in Heaven.
One day my heart is going to stop, and that will be the end of my body
-- but not the end of me. I may live 60 to 100 years on earth, but I am
going to spend trillions of years in eternity.
This is the warm-up act, the dress rehearsal.
God wants us to practice on earth what
we will do forever in eternity.
We were made by God and for God, and until you figure
that out, life isn't going to make sense.
Life is a series of problems:
Either you are in one now, you're just coming out of one or you're
getting ready to go into another one.
The reason for this is that God is more
interested in your character than your comfort.
God is more interested in making your life holy than He is in making
your life happy.
We can be reasonably happy here on earth, but that's not the goal of
life.
The goal is to grow in character, in Christ likeness.
This past year has been the greatest year of my life but also the
toughest, with my wife, Kay, getting cancer.
I used to think that life was hills and valleys - you go through a dark
time, then you got to the mountaintop, back and forth.
I don't believe that anymore.
Rather than life being hills and valleys, I believe that it's kind of
like two rails on a railroad track, and at all times you have something
good and something bad in your life.
No matter how good things are in your life, there is always something
bad that needs to be worked on.
And no matter how bad things are in your life, there is always
something
good you can thank God for.
You can focus on your purposes, or........
you can focus on your problems.
If you focus on your problems, you're going into self-centeredness,
"which is my problem, my issues, my pain."
But one of the easiest ways to get rid of pain is to get your focus off
yourself and onto God and others.
We discovered quickly that in spite of the
prayers of hundreds of thousands of people, God was not going to heal
Kay or make it easy for her.
It has been very difficult for her, and yet God has strengthened her
character, given her a ministry of helping other people, given her a
testimony, drawn her closer to Him and to people...
You have to learn to deal with both the good and the bad of life.
Actually, sometimes learning to deal with the good is harder.
For instance, this past year, all of a sudden, when the book sold 15
million copies, it made me instantly very wealthy.
It also brought a lot of notoriety that I had never had to deal with
before.
I don't think God gives you money or notoriety for your own ego or for
you to live a life of ease.
So I began to ask God what He wanted me to do with this money,
notoriety
and influence.
He gave me two different passages that helped me decide what to do,
Corinthians 9 and Psalm 72.
First, in spite of all the money coming in,
we would not change our lifestyle one bit.
We made no major purchases.
Second, about midway through last year,
I stopped taking a salary from the church.
Third, we set up foundations to fund an initiative we call The Peace
Plan - to plant churches, equip leaders, assist the poor, care for the
sick, and educate the next generation.
Fourth, I added up all that the church had paid me in the 24 years
since
I started the church, and I gave it all back.
It was liberating to be able to serve God for free.
We need to ask ourselves: Am I going to live for possessions?
Popularity? Am I going to be driven by pressures? Guilt? Bitterness?
Materialism?
Or am I going to be driven by God's purposes (for my life)?
When I get up in the morning, I sit on the side of my bed and say, God,
if I don't get anything else done today, I want to know You more and
love You better ....
God didn't put me on earth just to fulfill a to-do list.
He's more interested in what I am than what I do.
That's why we're called human beings, not human doings.

Monday, February 20, 2006 9:58 PM EST

Hi all! Amber has had a cold since last Thursday. She had some pretty cranky days, but was extremely happy today. We saw our new GI doctor for the first time. It was a pretty uneventfull appt. He saw no reason to put her on any meds for Irritable Bowel Syndrome at this time. Especially when she was giggling through the entire appt. Also, the mucous in her stool has been gone for over a month. I explained to him that some days are good and others aren't so good. And he said that's how it will always be. I guess I was looking for the magic pill to make it all better. Anyway, I liked the doctor. He was very business-like and then seemed to become more human at the very end of the visit when he held the door open for me, actually smiled and then went out into the waiting room to hold the other door open for me. Now that may seem like nothing, but he scored some points with me. I guess I notice every little thing. He most certainly is better than our other GI doctor.

Karl comes home tomorrow. He called last night and is very anxious to get home, even though he had a wonderful trip. He is flying all night and will arrive in the morning.

I finally got our schedule arranged so Amber could go to the Medically Supervised Water Therapy tonight. Well, another child had a potty accident in the pool so they had to cancel. It figures!! The next time we are available to go is in about four weeks. Whatever! It will happen some time.

The car seat should be in this week. Can't wait to get it!

Amber's Great Grandma had a stroke. She is doing well, but had a g-tube put in today. Maybe she can tell me what it's like to have one. Also, I have always wondered if Amber can actually taste what is going in her. I think she can as she gags when I give her prune juice through her tube.

Oh! Almost forgot. Amber has an ear infection so she will be starting antibiotics. You would never know it as she was extremely happy today.

Nothing else going on! Thanks for stopping by!

Tuesday, February 14, 2006 11:33 PM EST

Amber is doing really well again. Very alert and happy. I wish I could pinpoint how to keep her this way. I try to pay attention to every little thing and keep it going that way, but she always seems to snap after a few days.

At her PT appt. today we found out insurance won't pay for the special needs car seat. So we have a call in to Safe Kids, which is a car seat program. I am told they will get us one right away and work with us on a payment plan. This car seat won't be the expensive one the insurance would have paid for so I'm not too concerned.

I just heard from another mother on the RettNet (internet support group) an awesome idea. She has a stamp for her daughter's name. Instead of someone helping her write her name, they help her stamp it. I think that is such a great idea. Now why didn't I think of that.

Today I raised my voice at Amber because I had told her I was going to get her story book website running and then I checked my emails. She got VERY impatient and then started crying. I yelled and her feelings were hurt...and then she yelled right back at me. It was too funny. We kissed and made up immediately.

I checked out the special needs class Amber could possibly go to next year. I liked it much better this time. Next I am going to check out the special needs school that is about 35 minutes away. I know I don't want her going there, but I need to check it out just to make sure. I am hoping Amber can go to kindergarten 1/2 day next year, and the special needs class the other 1/2 day. This school is about 3 miles away.

Amber's speech therapist (Cecelia) had an eye gaze board made for her. I haven't had a chance to try it out yet, but I have seen her use it with the therapist. I will try to post a picture of it next time. It is so exciting to see someone else excited about Amber and how much she has improved. Cecelia reminded me that when Amber started coming to her, she was barely recognizing or responding to anything and now she consistently can pick out whatever you ask.

I have to mention what I caught Mariah doing today. Remember she is my child that has a scissors/hair fettish. Well, SOMEONE (ok it was me) left the scissors on the table and I actually caught Mariah trying to cut the cat's hair!! Now I had to laugh at that one!

Karl is still in Uruguay and is doing well. Only seven more days to go. He called and talked to us today so that was nice.

Thanks for visiting!

Thursday, February 9, 2006 9:34 PM EST

Oh what a lovely day today was. Amber whined and/or cried the entire morning. She needed sleep and had to poop, and would do neither. Today she took a total of three five minute naps.

She got her haircut after school. They sat her on my lap.



Her hair was clear down her back. She was doing extremely well sitting on my lap.



Then all of a sudden I felt this mini explosion on my lap. I smiled and looked at the hairdresser and said "she's pooping". The woman stepped back and said "Oh! I'll go get some paper towels." I just watched her walking away thinking, why in the world would she be getting paper towels. And then I looked down. To my horror, there was poop on the chair, poop up Amber's back, poop on the floor, poop on my pants. I might add the smell was pretty bad too. It was unbelievable. I took a deep breath and told myself to get a grip and I would get through this. It was all I could do not to burst into tears. The salon was full. I had to get out to the van to get more clothes, walking through the salon with poop on both my pant legs. Yes, people noticed. They weren't small spots. They moved us to a room and I had to totally change Amber. Of course, she was laughing the whole time. Then when we finally got back to finishing her haircut, Amber decided to cry. And that was how the rest of our time there went. I'm sure the women getting their hair and manicures done just loved us. Needless to say, I gave the hairdresser a big tip. I realize Amber couldn't help it, but....it was totally embarassing and I just wanted to get back to the safety of HOME!



Monday I will be visiting the special needs classroom AND Kindergarten class at a different school. Our IEP meeting is scheduled for March 29 and I need to decide what direction we want to go for next year. I am hoping to get Amber into the Kindergarten class for 1/2 day and the special needs class for the other half of the day.

Tomorrow Karl leaves for Uruguay. I don't think the kids realize how different life is going to be for the next couple weeks. We are so excited for him.



This is the group that is going. Karl is the one on the far left.

Thanks for listening to the drama in our life AGAIN.

Monday, February 6, 2006 10:10 PM EST

Just wanted to mention, if anyone is visiting our website for the first time and knew Aunt Barb PLEASE sign the guestbook. Would love to hear from you. I see someone did and I just loved reading about Aunt Barb. Thanks!

Take care everyone!

Tami

Saturday, February 4, 2006 8:23 AM EST

Amber is doing well, finally. Although today is Saturday and she has a rough time when she gets out of her routine. She has already started crying this morning, but is now happy. She was sick this week with a bad cold. Thursday was the worst. She whined alot during the day. The only thing that made her happy was me (and only me) rocking her. It was so precious. She would just lay her head on my chest and look up at me. I treasure that she wanted only me and was content with me just holding her. She just wanted comfort.

We went to the doctor on Wednesday. She has a staph infection on her bottom, so she is on antibiotics now. Also, the doctor was willing to prescribe the Tylenol with Codeine. Yippee! We have our own prescription now. We talked about the mucous in her poop. She suggested Amber has Irritable Bowel Syndrome. The GI doctor had also said that. She thought we might want to try a drug (starts with a Z, can't remember the name) to help. It is not approved for kids, but then, we throw out the rules for Amber. When we see our new GI doctor, he would be the one to actually prescribe it. Maybe that will eliminate alot of Amber's bowel problems. While at the doctors, Mariah kept interupting and telling the doctor "My Bushtee, she my Bushtee". This is Amber's nickname we gave her. How did we get that you ask? We're weird. We started calling her Ambush and it ended up being Bushtee, pronounced Boosh-Tee.

Well, I have to mention our week with Mariah. One night she was put to bed and then she decided to get up, go in her sisters' closet and....cut her hair! Of course, she tried her skills on Barbie first to make sure she did it right. Of course, whenever anyone would ask who cut her hair, she would say "Mommy did it!"

The next day, she decided to put lots of toilet paper in the toilet and then hold the handle down trying to get it to flush down. Water came pouring out of the toilet and we had quite a mess. When Daddy came home and unclogged the toilet, she said "Sorry Daddy for the toilet". How cute!

Took Hayley (our 9 yr old) to the eye doctor yesterday and she has to get glasses. She has been complaining the last month that she can't see the words when doing her school work.

Thanks for checking in. Don't forget to sign the guestbook once in awhile!

Tuesday, January 31, 2006 8:56 AM EST

Hi Everyone! It feels like it's been forever since I last updated. Amber is doing well today. Yesterday was not good. Same old same old. Amber woke up this morning with poop to her neck!! I knew it was going to be a good day when I saw that!

I ended up giving Amber Tylenol with Codeine yesterday. It seems to be the only thing to calm her. She was smiling within five minutes. The miracle drug! We could tell as soon as it wore off. I even kept her home from school yesterday. We were able to go to her wheelchair appointment. I didn't want to miss that. He adjusted it and we ordered a different strap to keep her in. This will go over her shoulders. Her PT talked to me about keeping her back straight while in the chair. Amber is very prone to Scoliosis. We also were able to order a new car seat. It will be at least 4-5 months before it comes in. Right after that appointment, Amber had Speech. (It was at the same place, so that worked out well.) She wasn't able to stay the entire time because she started crying. Once we got home about 6pm, she slept the rest of the night until morning! Amber's speech therapist is having an eye gaze board made for her. She had one there yesterday and it seemed to work really well. This will be a clear board where we will put pictures in three different spots for Amber to make choices. It is made of plexi-glass so it is see-through. This way the person holding the board can look straight through the glass and see exactly where Amber is looking. We have found this works much better than waiting for her to respond with her hands.

On February 10, Karl, Amber's dad, will be traveling to Uruguay, South America, on a missions trip with church. We are very excited for him. In the midst of all our serious financial difficulties, the money for this trip practically fell in our lap through various sources. We know this is God's plan when that happens! It sure will be strange to have him gone for ten days. I keep wondering if it will be harder or easier with him not here. Please pray everything goes well for this trip.

Amber sees her regular doctor tomorrow for a check-up. I am hoping she will give us a prescription for the Tylenol with Codeine as what I am giving Amber now isn't her prescription!

Aunt Barb's funeral was fabulous. I was even able to read at it. I read Philippians 4:4-9. I have been having a rough time ever since. I have been crying alot and just very sad. If I allow myself to think about her, that's when I get down. It is so hard to believe that someone goes their entire life, and just like that, their gone. We have all lost loved ones and we will all die. It definitely brings on some self-examination. I trust in what the Bible tells us, and yet, how can I not doubt just a little since no one has actually come back and told us what happens. I guess that's where my faith kicks in. The kids handled everything very well and it was a great learning experience for them. Aunt Barb's death has definitely brought our family closer together and made everyone that knew her a better person.

Hope everyone is doing well. I haven't visited my Caring Bridge friends in quite a while, so I hope to catch up this week!

Tami

Jesus said "I tell you the truth, whoever hears my word and believes him who sent me has eternal life and will not be condemned; he has crossed over from death to life."
John 5:24

Friday, January 20, 2006 3:14 PM EST

I just love the messages we have received in the guestbook. Anyone that has a Caringbridge page knows that sometimes those guestbook entries mean the world. I have come to really know some of you and keep up with your lives. I am amazed at what some of you must go through.

Aunt Barb's funeral is Monday and we will be spending time with family this weekend. I am sometimes amazed at how I am able to rise to the occasion once again and feel the Lord's strength during a difficult time. I have questioned myself these past few days, wondering why I am doing so well. There are tears, but I also feel an unexplained strength that this is a part of life and that Aunt Barb is most definitely in heaven.

God is our refuge and strength, an ever-present help in trouble.
Psalm 46:1

I was able to read Aunt Barb's obituary today and donations can be made to the International Rett Syndrome Association in her name!!! I am SO touched that IRSA is who she chose. Aunt Barb loved Amber dearly and helped me a great deal during the difficult time when Amber was first diagnosed.

We are having difficulty each morning and sometimes all day with the pooping. I have started giving her prune juice in addition to her medication. It is so frustrating to be plugging along with everything going so well, and then all of a sudden what worked before, no longer works. There's no reason for it. I have to keep adjusting the meds and keep trying different techniques. I will be glad to try out our new GI doctor in February. Maybe he will have some ideas. Of course, when we go, Amber will probably be doing fine.

We got a Powerlink today. It was paid for through some resource money Amber gets each year. This is a device where we can plug into it anything electrical, and then hook up Amber's switch. Amber will be able to operate things like the vacuum cleaner, a blender, a can opener, a fan, a light, etc. Now she can help the kids do their chores!

Oh! And one more thing. I think I have failed to mention that Aunt Barb had ovarian cancer. She was diagnosed 6 1/2 years ago and was in the LAST stages of it. So we feel very blessed with the time we were given with her. She was a very strong person and would often jog a couple miles within days of getting chemo.

Thanks for stopping by!

Wednesday, January 18, 2006 8:36 AM EST

Aunt Barb passed away late yesterday afternoon. It doesn't matter how much you prepare for this, it is still a shock. Aunt Barb was a special person. We were able to take TWO!! Disney vacations with her and her husband. I will treasure those memories forever. Aunt Barb was a special person and cared very much for others. She worked with handicap children and had no problem changing a 14 year old's diaper. That was the type of person she was. More recently she was an Early Intervention Specialist and became very attached to the families she served. Whenever she came to visit, she would always bring a craft to do with the kids. She was also the type of person that loved to clean. So she would often wash my kitchen floor, clean the bathroom or do my windows. There was plenty to clean around here for her! I will miss her dearly. Thank you everyone for your prayers.


This is my favorite picture of Aunt Barb. This was taken over the summer in her kitchen.

And on to Amber. Each morning she has trouble pooping and until we get it out, she is whining and crying. I try different techniques to get things moving along. Laying her on her belly seems to be helping.

Yesterday when picking Amber up for school, Mrs. France had her standing at the outside door looking through the window. It was SO FUNNY! Amber was just beaming as she watched me pull up in the van. She just loves to be standing like the rest of us.



Amber's PT recommended I put Amber on the floor more. Especially in front of the tv so Amber has to lift her head up to see it. Here Amber is trying to get up on all fours.



And she did it! Go Amber!

Last Sunday Amber's pulmonologist was hit by a car while riding his bike! What a shock! He was a very, very, nice and gentle man. He was the one who recommended Amber get a g-tube and did all the tests to see if she was aspirating. You might recall (if you really follow us and have a good memory!) the time Amber had to have a tube put down her nose and into her lungs while in the hospital. I called it the torture chamber. He was the doctor that did it. I went back to her room and cried and he had her back to me in about five minutes.

All this stuff going on makes you really think and value life even more.

Jesus said, "In this world you will have trouble. But take heart! I have overcome the world."
John 16:33

Sunday, January 15, 2006 3:56 PM EST

Amber is doing well. She had a very rough day yesterday and so-so today. It's all about the poop. This will always be a constant struggle. I don't let her go for very long being upset, but it just makes her a little "off" the rest of the day and not her happy self.

This week Amber has been saying lots of words at school and at home. This is so exciting. She tries so hard to talk.

It was a year ago this month Amber started having seizures.

Amber is down to 36 lbs. She has lost 3 lbs. in the last month. I have cut back on her PediaSure and it seems to have made a difference. This is ok with me. She was getting a little on the heavy side. Just ask my back.

Jay (11 yrs old) has had headaches for years. We got him glasses and the eye doctor swore it wouldn't help the headaches. Well, it has. Very seldom does he get the headaches anymore. Totally amazing! We are so relieved.

We got to visit the ER Friday night. Mariah decided to put a popcorn kernel in her ear. We could hardly see it. At the ER, they were able to suction it out right away. I was so excited until the doctor said "There's another one!". She had TWO popcorn kernels stuck in her ear. The second one didn't come out quite so easy. The doctor did a great job. I don't think Mariah will be putting anything in her ears any time soon. She handled it very well considering what she had to go through.



Here is Amber in the first walker we ever had. We got it from another RS family off the internet. We just paid for shipping. Then insurance paid for the attachments. We loaned it out to another family and just got it back recently. It didn't work well for Amber before, but now seems to fit her much better.

Please continue to pray for Aunt Barb.

Thursday, January 12, 2006 8:35 AM EST

On Tuesday Amber had a PT Eval. It really was a great appt. and I realize Amber really would benefit getting more PT. I got some great ideas and plan on continuing weekly appts. Our next step is to get Amber into water therapy. While at her appt. we were able to get her wheelchair adjusted. What a difference!! She had grown so much and was so cramped.

Not taking the wheelchair to school is working out so well. What a load off me. And to give credit where credit is due, I think I originally heard about the stroller idea from Skylar's mom. Oh well, I tried to take credit for it. ha ha

Amber is continuing to do well. She still has problems once in awhile with pooping, but I am learning to get it under control quickly.

We're a little sad around here today. Aunt Barb is in her final days. We went to visit her on Tuesday. It was a great visit. I took just Amber and Mariah, along with grandma (Aunt Barb's mom). Mariah (2 yrs old) was so loving to Aunt Barb. She kissed her and held her hand. She played with her Dora figurines on the bed. Aunt Barb always got sooo much from the kids, so we know she was enjoying our time there. She had a smile on her face often, but this is still a very difficult time for her and the whole family. Things aren't going real smoothly as each day goes by and we ask that you continue to pray for her and our family. Your prayers really do make a difference! I just have to share that I asked Barb if she was ready to meet Jesus and she perked right up and said "ABSOLUTELY!" So we are praying for God's peace right now during this very difficult time. She is the most amazing person.

Thanks again for your guestbook entries. They are very uplifting. I will try to have some pictures next time I write.

Sunday, January 8, 2006 2:55 PM EST

Amber is still doing well. Yippee!! I have to keep her occupied or she gets cranky. Everything is flowing smoothly, if you know what I mean.

Amber has been playing with some of her new toys from Christmas. She always likes new and different things. She got a DVD called Brainy Baby Right Brain. It is like her Baby Einstein DVDs with classical music. She just loves it. In one part, they play Peek-a-Boo on it and Amber laughs hysterically.

Getting Amber's wheelchair out each day for school and then having to lift it back in the van is such a pain. So I got this brilliant idea (or is it a no-brainer?) that I just take in a stroller for her to use at school, and just leave it there. She is rarely in her wheelchair (that is so wonderful to know)at school. It is only used when she goes to the library, gym or outside. I have been bringing the wheelchair in the house every day, which is also a pain, but necessary. So not taking it to school will be absolutely wonderful. Amber needs to be in different rooms with us and the wheelchair really comes in handy. She also needs it for when she is on the computer.

On Wednesday night Amber received awards for her Rainbows class she is in at church. It is kindof like girl scouts. Each month, she earns badges to put on her vest. I wasn't quite sure how we were going to work this and was thinking I would just wheel her up in front of everyone. Well, Miss Kristen would have none of that and actually carried her up there and then sat behind her so Amber could stand while receiving her award. Just like the other kids! She was just beaming. I often have people come up and ask me who it is that is with Amber on Wednesday nights. They always say "Boy are you lucky!" And I say "I know!"



Unfortunately, my pictures didn't turn out, but here is a picture of Amber standing in her classroom with the other kids, right after the awards. Miss Kristen is behind her helping her stand.



Here a little girl was helping Amber while they were singing. It was so precious. This little girl was telling Amber "clap!" and then she would take Amber's hands and put them together. It is just so awesome to see kids helping Amber. No one told this girl to help. It just comes naturally. And that is what is so wonderful for other children AND Amber to be in classes together.

So again, there isn't a whole lot to say and again, I will say THAT'S GOOD NEWS!

Please continue to pray for Aunt Barb. This is a difficult time for our family. It is also hard since she lives about two hours away.

Thanks for signing the guestbook everyone. It really is cool to see who signs it.

Tuesday, January 3, 2006 10:32 PM EST

Amber is doing just fabulous. She is very happy, very alert and just plain old fun to be around. I am finding she can't stay home an entire day and be happy. She has to get out a little bit. She is such a social butterfly.

On Saturday I took the girls shopping with their gift cards and money from Christmas. Amber got Cookie Monster from Build-a-Bear. I held up two bears for her to choose from. Then, while we were in line, I noticed she kept looking at the Cookie Monster bear, so I held it up with the previous bear she had chosen. She couldn't take her eyes off Cookie Monster when I asked if that was the one she wanted. Then when it was our turn, I was stressing that I didn't have the right bear so I had Tori go get the other bear so I could ask Amber one last time and she chose Cookie Monster again!



Here Amber is right after he was stuffed and we gave him a "bath". I know I say she is always so happy, but it seems like when I pull out the camera, she quits smiling! Amber really enjoyed shopping at the mall. That was her first time at the really big mall here in town. Lots of action going on there, which is just what she likes.

I called the surgeon and Amber can throw up by mouth and it is ok. In the beginning right after surgery it was a little harder for that to happen, but now it is not.

Amber has a chronic cough right now. I think she is doing it on purpose. Kindof like it has become a habit. She gets attention by coughing. The other possibility is that her reflux is bothering her. I don't really think that is the case because she is so happy.

I have been putting Amber's AFOs on and putting her in her walker every day. I found a pair of Tori's old tennis shoes that fit over her AFOs for the time being. Yesterday Amber was able to stand in her walker for an hour. That is a very long time for her.

Every day Amber "reads" books on her story website. Tori and Mariah love to sit with her and listen also. Amber gets so excited when she is on this website.

There really isn't a whole lot to tell right now. That's good news! Thanks for checking in. I love your guestbook entries!

Thursday, December 29, 2005 8:35 PM EST

Hi Everyone. Hope you had a great Christmas. Ours was super busy and crazy. We feel blessed to get together with so many family members and their gifts were overwhelming. Unfortunately, Amber didn't get to open many herself, She was sick Christmas Day. She threw up quite a few times and she slept alot. The good part is she didn't cry. That would have been a real drag for everyone. She is still in and out of being ok. I'm not quite sure if she is sick because sometimes she acts totally fine. She has been spitting up or throwing up some days. I need to call her surgeon and make sure that is ok since she had the surgery that is supposed to prevent her from throwing up by mouth. If I remember correctly, the surgeon said she would eventually be able to throw up. But our GI doctor we saw this week says otherwise. I tend to agree with the surgeon.



Here Hayley is putting makeup on Amber the day after Christmas.

On Tuesday we saw the GI doctor and that was our last time. He is moving to New Mexico. Can't say we are too disappointed. We will now go to a new GI doctor who is well known in town. So this is meant to be. I am anxious to hear if he has a different take on the mucous. Our current doctor says all poop tests came back normal.

Today we saw our physical medicine doctor. She is just awesome. While examining Amber we heard "mommy" that sounded just like a little doll would say in a high pitched voice. Immediately Dr. Miller says "Who said that?" and looked around. It was the funniest thing. It was Amber! Dr. Miller says "Well, Amber I do believe you just made my day!" We were excited letting her know we heard her. It was the coolest thing. Dr. Miller asked how that happened since she has seen numerous RS girls and none have ever talked. I said "That's my Amber!" She is always surprising us. Anyway, Dr. Miller suggests we get some extra PT going (more running for me)and doing the swimming therapy wouldn't hurt either. So I am going to see what I can do. She also said she believes Amber has the potential to walk, but won't guarantee it will ever happen. In the meantime, we got our old walker back that I loaned out to another family. This is a walker I may never have mentioned before. It is a very nice one and I am hoping between the two walkers we have, we can get things rolling. (Or should I say walking?) Also, Dr. Miller says Amber needs to start wearing her AFOs more. I have really slacked on using them because I didn't believe they did anything for her. Dr. Miller says they should help. They are so bulky and Amber fits in only one pair of shoes with them, and even that is a struggle. So I will have to work on getting some more shoes.

I got the meds straightened out at the pharmacy. I guess I got my feathers ruffled unnecessarily. We didn't have refills on our scripts, thus the need for a new one. That is NOT what the pharmacist said when I tried to get the refill, but no harm done.

Back to Christmas. It was a great time and everyone helped so much. Just lots of chaos and craziness. I don't think Amber could handle all the commotion. On Monday we got together with more family. Amber was fine all morning, then a half hour after we got around alot of people, she threw up. Since Christmas, over half of Amber's family has gotten sick. We're talking mom, dad, grandparents, aunts and uncles. Only Mariah and Amber have gotten sick of the kids, so far..... It is so crazy!

We were able to get together with Aunt Barb the day after Christmas.



She is doing as well as can be expected. She is very very tired all the time. I think about all of us feeling so sick and how great it feels to get back to normal. And then I think about Aunt Barb and can't even begin to imagine what she is going through. How she must be feeling right now. Thank you for continuing to pray for her and our family.

Last night the kids went roller skating with our church. I asked if Amber could go out for a little bit in her wheelchair. We had to get special permission and they even gave us an "escort" while she was out there. The skating guard went around with Amber and the girls until they were done.



Amber enjoyed it soooo much. She went out when it was dark and strobe lights were going all over on the ceiling.

Our kitten is getting quite big. He is quite a character.



Here he is climbing our Christmas tree. He does this numerous times each day. (Yes, he has broke many ornaments!)

Hope everyone has a great New Years. We are staying home and resting!

Saturday, December 24, 2005 4:27 AM EST

Hope everyone has a MERRY CHRISTMAS.

Nothing but busy around here, minus the stress. Honest. Aunt Barb and Amber have helped me appreciate what is REALLY important. I figure I have probably forgotten someone's present or some dish I was supposed to make. And I don't care. It is such a wonderful feeling not to care. Unfortunately I have much bigger things to worry about.

Last Sunday we took the kids to see The Lion, The Witch and the Wardrobe. We don't go out to see movies so this was a real treat for all of us. Amber couldn't stop smiling. She was able to sit in her wheelchair right next to me and did great. She got a little noisy a few times and I had to tell her to keep quiet, but they were happy noises so I can't complain. The movie was AWESOME AWESOME AWESOME! I can't wait to see it again. I cried the last half of the movie. Jay and I had read the book so it was fun to compare the movie to the book. The movie was a fairy tale that had somewhat the same story line as Jesus sacrificing his life for us. It was very powerful and intense. This was definitely the most violent and somewhat scarey movie the kids have ever seen. Gosh was it good. I have a smile on my face just thinking about it.

I subscribed Amber to a storybook website. She is able to have stories read to her via the Internet. I hook up her big blue switch. She picks a book from the list. Each time she hits the blue switch, a page is turned. The page won't turn until she hits the switch. Also it won't turn unless the previous page is done being read. The book is read to her, complete with sound effects. She just LOVES it. I often find the kids standing around her listening to the story. Mariah tends to get a little impatient and keeps telling Amber to hit the switch. Sometimes she will lift Amber's arm to help her. It is so precious to see.

Amber had a little trouble this week pooping. I didn't make it to the pharmacy one day to get her prescription, so she missed a day. I gave her something else instead, but it just didn't do the job. She should be back on track this weekend, I hope.

Because of the holidays, Amber was able to go to her daycare on Thursday and Friday all day. WOW! I can't believe what a difference in my days. I got so much done. Sometimes I try to kid myself that Amber isn't much work, but I sure do notice when she is gone. So I decided to send her to daycare four days next week to give myself a break. As soon as we walk through their doors, she starts smiling. She absolutely loves it there. They tell me she giggles and laughs all day. She definitely wouldn't be doing that if she were here. This just tells me I need to figure out something for her to be in school all day next year.

I am having a little problem getting Amber's seizure medicine from the pharmacy again. Not sure what is going on. Each time I question them, I don't really understand what they are telling me. They tell me they don't make a 50 mg. dosage like the doctor prescribes. So then I say, ok give me 100mg & 25mg. (This would work for the amount I give her per day.) Then they say they have to contact the doctor. I have been dealing with this for a couple weeks now. I have learned to request the meds weeks before I actually need them because this happens every time. So finally yesterday they tell me the doctor said a script was given to me, which I forgot. So I find it and take it in. The problem is, the script said 50mg dosage!!! But this time they have no problem with giving me the 100mg & 25mg based on the 50mg script I brought in. My question is why did I have to give them a script when they already had the IDENTICAL one in their system that still had refills on it. Whatever the lady told me, didn't make sense. I really questioned her too. I told her I don't expect this to happen again. I'm not going to let this drop. When I pick up the meds, I am going to question them again.

Please continue to pray for Aunt Barb. She is just amazing. Hospice is coming in to see her now. She is so strong. I talked to her yesterday and she said she was going to work out a little bit. I said "You go girl!" She has so much peace. It is so amazing. It is during our deepest, toughest times in life that our Lord will carry us if we seek him out and make him #1 in our life.

You will call, and the Lord will answer; you will cry for help, and he will say: Here am I.
Isaiah 58:9

It truly is amazing to listen to Aunt Barb. Earlier this week my mom (her identical twin) asked how she was doing and Aunt Barb said "I can't complain". Now that's what I'm talkin' about!

I did send a Christmas card to the guy who owes us money. Maybe his wife doesn't know what is going on and she will read it. I wrote at the bottom something about him ruining us financially and to please pay.

Two days ago we prayed before dinner. One of the things I prayed for was that we received some unexpected money. And then I said "or expected money". Well, the next morning Karl gets a call from a guy who owed us money two years ago and never paid. His business had folded and we never got our money. It wasn't a huge amount, but we were just so amazed that our prayer was answered that quickly. Two years ago and he calls us now??? That just amazes me.

We have appts. in January for Amber to get her wheelchair adjusted and an evaluation with a Physical Therapist. We have to at least have the eval. in order to get the car seat and anything else I want paid for through insurance. The PT has to do the ordering. I don't plan on seeing her on a regular basis unless I think she can do something for us. Amber already gets PT at school.

So I hope everyone has a very Merry Christmas. Try to remember not to let the little things stress you out. If something happens, try laughing about it instead of getting upset. Try to remember there are much bigger things you can waste your energy on.

Oh! And one more thing. Mariah decided to cut her hair yesterday. So one side of her hair stops at her ear. That kid is so cute. (Can you tell she's my last baby?) She brought her hair to me to show me what she did. And then I really saw what she did when I saw my living room floor!

I hope to have some pictures the next time I write.

Sorry guys. This was a long one.

Thursday, December 15, 2005 8:04 AM EST

We got our pictures taken this week. It has been YEARS since we have done this. Bruises, static hair, unhappy kids. It has just been too overwhelming for me to consider, but we finally did it. We did pretty good. We couldn't get Amber to smile though. We got a disk of all the pictures. This is just one of 63 they took!

Amber is still doing well. Sometimes she has a rough time in the mornings, but once we take care of her pooping, she is fine. (Now you didn't think I was going to write with out mentioning poop, did you?)

I decided against getting the car seat for now. It would be silly for me to purchase it when insurance will pay for it. I am just not getting anywhere with a therapist helping me order one. They are short on staff right now and so I am going to our physical medicine doctor to get things rolling. I have been waiting and asking for months and nothing is happening. She will be able to help us with the car seat and some other things I am looking for, like a bath seat and adjusting Amber's wheelchair. Amber has grown and it doesn't fit her well anymore. Also, I don't feel Amber is moving forward with her walking and would like to know if there is anything else we can do. This doctor is great and I know she will steer me in the right direction for everything, even stuff that doesn't have to do with her specialty.

I am still wondering what to do about Amber next year and want to visit the special needs classroom again that is all day. I feel Amber needs to be in school all day. Home is just not as stimulating for her unless we are sitting with her playing at all times and who has time to do that! As much as I'd like to be the perfect mom to all the kids, it just ain't gonna happen! I can't sit with Amber and homeschool the others at the same time. We all tell Amber she's the smartest kid in the house. She's the only one that goes to school!

We have been very busy this month getting ready for Christmas. The kids are taking charge of making the cookies and don't really want my help so I just monitor and help as needed. It is great, but could someone tell me how I can stop from eating those darn cookies EVERY day?

We still haven't received our money from the large job we did back in June. It is going through all the legal proceedings and we are in such a bind financially because of it. What really burns me is I went past the guy's house and business (their on the same property) and he is building another building for his business!!! It is all I can do not to let the anger over-take me some days. This may sound stupid, but I think I am going to send the guy a Christmas card and write something really witty in it.

Mariah (2 years old) is officially potty trained. She pretty much did it herself. She kept telling me "no diaper" and wouldn't let me put her diapers on anymore. She can even go all night! I notice every little thing Mariah does. It is so neat to watch her learn and grow. I often find myself comparing Amber and Mariah. I realize how little Amber is able to do. When Mariah says "Shut Up Jay" to her brother, I say "Ahhhh, isn't that cute". As Mariah does more, it just makes it more noticeable all that Amber can't do.



**God can use everything he allows in our lives for HIS purpose and OUR good.**

Sunday, December 11, 2005 11:20 PM EST

Amber is doing great. Finally! We doubled her poop medicine (Miralax) and she is taking Prevacid for the reflux and all is well. She doesn't always go every day, but she is no longer crying. I have to wonder if the reflux was just as big a problem as the constipation.

I got all the stool samples into the lab after going there three different times to get instructions and take in samples. I never even took Amber in but did it all without her. Can't wait to hear the results, which probably won't be until our appointment between Christmas and New Years.

Thursday we went to Amber's Christmas Party at her daycare. It was so nice. Santa was there, along with food and we sang Christmas carols. Unfortunately, Amber was a little cranky.

I found a car seat for Amber here in town. I just haven't had a chance to go get it. I can't wait because the one we have now she has definitely outgrown. It is so time-consuming getting her in and out of it.

When feeding Amber through her g-tube, I have finally figured out she is messing with me. As soon as I start pouring her Pedia Sure in, she grabs at the tube and I usually lose my grip and make a mess. I have told her to knock it off and she looks me right in the eye and grabs at it again, always with a smile or a squeal. She is doing it on purpose! It has become a game for her. A part of me loves to see her doing it, but sometimes it isn't funny. It doesn't matter how prepared I am she is able to knock the tube out of my hands. So we will have to work on that. Sometimes I have one of the other kids hold her hands down.

Thanks for checking in. Let's hope Amber continues to have good days. I hope to have some pictures the next time I post.

Saturday, December 3, 2005 6:46 AM EST

The GI appt. went well. He started off saying mucous in the poop means nothing. By the end of the appt. I walked out with a prescription to get loads of tests done. I told you he is weird. He has some ideas and wants to see us back in a month, the week in between Christmas and New Years, after the test results will be back. Guess this means I can't put off doing them like I always seem to do. I am either going today or Monday morning. He says she probably has Irritable Bowel Syndrome. He also put her back on Prevacid for her reflux. He reminded me that could still be going on and I know he is right. I am happy that insurance will now pay for soluble tablets which will make it sooooo much easier to get in her. I also have to get over-the-counter pills that will add a good kind of bacteria (I think that's what it is) that she may be lacking. If all this doesn't make her happier and take care of the mucous, he is going to try a different medication that "they use in Columbus". It isn't supposed to be used on children, but we usually throw all rules out when it comes to Amber. So we will see. He gave me information on it so I can research it. I will definitely ask my internet support group if any girls use it. So our doctor was having a good day and he came through. I am so glad.

Amber is still up and down. She usually does terrible on Saturdays. I hope today will be different. She cried alot on Thursday night. They say she was ok at her day care yesterday. Every time I take her in, I remind them that her feet get cold so try to keep them warm. (use a blanket). I pick her up yesterday and they lost one of her socks. No big deal, but she has a shoe on with no sock and NO blanket. Her foot was cold! From now on I am taking her in no shoes and either double socks or slippers. I can't stand the thought of her feet being cold all day. Also, whenever I pick her up there, her face is all chapped. They don't adjust her arm splints if she gets them off or they fall down on her arm. This means her hands can get to her face. I really do like this place. They are nurses, not just day care workers.

Will write again soon!

UPDATE Saturday, December 3, 2005, 7:53 PM

Amber had a pretty good day. Yahoo! She took a good nap, enjoyed horseback riding and cried only a few times.

Amber hasn't been crying much but I have! Please pray for our Aunt Barb. I am so sad that she will be leaving us soon. Pray for her not to be in pain and to have peace. It is so hard to know someone is leaving us, to never be a part of our life again, until we meet again in heaven. This will all make sense some day.

Thursday, December 1, 2005 9:43 PM EST

Amber is still up and down. I don't know what is going on and it is very frustrating. I absolutely cannot wait to get her to the doctor tomorrow. Something is wrong and we need to figure it out. She can be very happy and within minutes cry, then get happy, then back to crying. Sometimes the crying will last for hours. I want her to get an x-ray to see if she is impacted with stool. She is going more regular now, but I still think there is a problem. I am also anxious to get her ears checked. Maybe she has something as simple as an ear infection. I hope we find something. I don't want her to have something wrong, but....it sure does give us some answers when we do find something.

Yesterday I visited the special needs class Amber could go to next year. Amber could go there, go to a special needs school that is over 30 minutes away, stay in her current preschool class or attend a regular Kindergarten class. She will turn five in August. The class I visited yesterday is in our local school district. She would even be able to go to some classes with typical kids. Well, I am disappointed to say I didn't have a good feeling about the class. Oh there are so many different reasons, but most of all, I had this sick feeling in my stomach. That's my mother's intuition. Thank goodness Amber can stay where she is at another year. I had so wanted to like this class because it would be all day and I feel Amber would benefit so much by being at school all day. I am very concerned that it is recommended she not have an aide if she were in the special needs classroom. I don't really need to worry myself about this too much at this point in time, but after next year, I will have to make some decisions.

Amber is growing out of her car seat. It is such a pain getting her in and out. I am getting nowhere on getting her another one. I am going to have to get aggressive about this now. I can't just order one. I have to go through a physical or occupation therapist and we don't really have one at the present time, other than at school once a week and I keep forgetting to ask that one! Twice I have talked to another therapist where she gets speech and I am getting nowhere with her. So I need to get moving on this since it will take at least six months to even get one when it is finally ordered. I have some other options in getting her one in the meantime, it just means I have to make some calls. I am also in need of a bath chair for in the bathtub. Again, I have to go through a therapist to get it. But I can maybe get one on loan if I just make some calls.

In January we receive $$ from a fund called Family Resources. I can't wait to order some things that insurance won't pay for. I also use this money to help pay for Amber's horseback riding.

One day this week Amber had a really good day at school and was really using her eyes to communicate. Also, she said a word at school. She really has a great bunch of people that work with her and bring out the best in her.

Please pray for my Aunt Barb. She has had ovarian cancer for 6 1/2 years and is in alot of pain right now and we are not sure how things are going.

So sorry I haven't signed many guestbooks lately. I have just been so busy and trying to keep up with everything. I hope to check in on everyone soon.

Oh, one more thing, Amber had a bloody nose today. I am assuming it is just from the weather and her nose being dry?? It was quite a sight to see though. She didn't have her arm splints on and when I came in the room she had blood all over her face and on her pjs. It is times like that when it hits me how vulnerable she is. She can't even let me know she has a bloody nose and is completely dependent on me to clean her up and take care of her.

Thanks for visiting. I hope the next time I write I will have some answers as to why Amber has been so unhappy.

Monday, November 28, 2005 11:16 AM EST

Hi everyone! I hope you all had a great Thanksgiving. Ours was very very relaxing. Amber decided to fuss a little bit while we were at the restaurant, but as soon as I took her for a walk, she calmed right down. By evening Tori (7 yr old) threw up her Thanksgiving dinner on the living room floor. Thank goodness for hard wood floors! She didn't feel better until yesterday.

Amber has been up and down. I know it is all because of her constipation. Just because she goes doesn't mean all is well. There may still be some impacted. I am glad we are going to see the GI doctor and I hope he doesn't get weird on me because I need him to give us some answers.

The doctor from Texas called today. Actually it is his nurse, (Judy) but she might as well be a doctor. She knows it all! She was just wonderful and I am so glad I have her to call when I am not quite sure what is going on and I'm not feeling good about what the doctors are doing here. She said all the right things. I told her I was concerned about the mucous and Amber's poop being so watery. I told her I know of other girls with RS who have formed poop and I even know one, no make that three, girls who take nothing for their bowels! Judy said something that hit me head on. She said every girl's bowels are different and just as one girl with RS can be skipping down the hallway, another girl can't even sit up unassisted. So it is with their bowels. They are each different. Boy did I need to hear that. So back we go to tackling this situation with all the medication we can. It is a must. As for the mucous, she said it could be a number of reasons and hopefully the GI doctor will take care of it all. We see him on Friday.

I am continuing to read the Child of Neurology papers and it is really really waking me up. (And I mean that literally!) Unfortunately, I read when I go to bed and then my mind is racing about all the information I have just absorbed. Last night's reading was a heartbreaker. It actually showed pictures of adult girls with RS and the varying degrees of RS they have. Scarey!!! I need to investigate Amber's head circumference as she was growing her first couple years. If I get this right, it has to do with how severe her RS will be as an adult!!! That seems crazy, but I know their head circumference does not grow as a typical child's would. I'm afraid I get caught up in thinking about what is going to become of Amber and I pray daily that God would take her before me because there will be no one to take care of her. I can't bear the thought of her living in an institution where someone could abuse her. It makes me very very sad every time I think about it and I have to get a grip and know that God is in control.

Thanks for checking in on us again. Christmas will soon be here. I am trying to get organized and enjoy this next month. The kids want to make cookies, see Santa, go to Christmas parties. But I am proud to say the Christmas Tree is up!

Thanks guys for signing the guest book!

Wednesday, November 23, 2005 7:14 PM EST

Things have settled down here. Amber was fine by Sunday morning and was able to sleep through the night Saturday night. She is back to her happy self again. This morning she woke up crying "the cry" and I told her I wasn't going to let this go on this time and promptly gave her an enema. She was smiling within ten minutes. So I need to make some changes because whatever we have been doing is no longer working. I guess I won't go into details on the changes, because who wants to hear all the details about Amber's "poop de doos"!

All Amber's test results on her poop came back ok. So now her pediatrician has recommended we go see the GI doctor. Oh joy. He is definitely my least favorite doctor and I'm not quite sure why I keep him around. I guess it is an effort to switch doctors and I REALLY like his nurse. Poor reason, but that's it. He has a bad bedside manner. I am sure I will have a story to tell after seeing him. We see him next Friday, 12/2.

I have also called the doctor in Texas, but they are out until Monday. I just believe something is going on with the mucous, but no one seems to be too concerned. I just love when I have to do all the leg work and research. NOT! I have asked the RettNet (my email support group) and some of the other moms have given some good suggestions on what might be wrong. They have suggested some different infections Amber might have with names I can't pronounce. I will go to the doctor with my suggestions, which I am quite sure he will appreciate. (That's another big NOT!)

Thanks for your guestbook entries. I check each and every day. I just love to see who is sticking with us and seeing what is going on in our world.

Hope every one has a great Thanksgiving. We are definitely taking it easy this year and...going out to eat!

Saturday, November 19, 2005 9:24 PM EST

We had such a terrible day today. I heard Amber up all night long. She never cried, but was very restless and noisy. Then she wasn't smiling this morning. That is usually a good indicator of what kind of day we are going to have. She did go horseback riding and was pretty cranky. By 2pm she was crying non-stop. I tried everything to get her to stop, and I mean everything. I used every kind of medication I could. Even the Baby Einstein videos didn't work this time. She was able to sleep for a few minutes in between her crying. She was so exhausted. I wasn't quite sure what the problem was, but assumed it was constipation.

Finally about 6:30pm I gave her an enema. She seemed to do better once she went, but still wasn't smiling. The crying did stop though. I was going to take her to the ER if the enema didn't work. Thank goodness she is sleeping peacefully now and I pray she will get a good night's sleep. This constipation thing is such a problem for her!! I don't care how on top of things I am, it just doesn't seem to keep her regular.

Amber is beyond pitiful when she is crying. I hold her and she looks deep into my eyes. I feel so helpless and it is so frustrating that this is still going on. We are on such a roller coaster of her being so very very happy and then plunging down so low that we can hardly stand it. My mind races and I wonder if she has a kidney stone or something really serious and painful because that is how she acts. Of course, the constipation is painful. Even pain medicine wasn't getting it for her so it was bad. I find myself walking into rooms and forgetting why. I am such a mess while she is crying and can't focus on anything but her and how I can make her stop crying.

Also, there was mucous in her poop again. I haven't heard any word on her tests, so I will call Monday. It would be nice if someone would call me, but it usually doesn't work that way.

I am really enjoying reading the Child of Neurology papers Amber's teacher gave me. I am learning lots. One thing Kathy Hunter states that really struck me is that everyone seems to underestimate the amount of pain girls with RS go through. She is so right. Every time something like this happens I vow I won't let Amber go through it again. It just makes me sick. Once she stopped crying I realized how physically sick I felt and how drained I was. It took everything out of me to watch her like that today.

I sure hope tomorrow is better and that the constipation was the only problem. It is such a guessing game.

Thanks for checking on us. Sorry we talk about the poop-de-doos so much. (That's what we call them around here.) I need to vent once in awhile and I feel much better now!

Thursday, November 17, 2005 4:28 PM EST

Amber is over being sick and back to her happy self.

Monday we went to speech therapy and she did so well. Miss Cecelia said Amber is nodding "yes" and "no". Also, she claps her hands together to sign "more". Amber does this clapping anyway, but seems to be doing it when she is asked if she wants more of something. The philosophy is to use something she already is able to do and get her to do it on purpose in order to communicate. Her hand use and eye gaze has improved sooooooo much. I attribute it to all the great people who work with her, whether they are therapists, at school or her siblings. (or me! Had to throw that in!)

On Tuesday we saw the neurologist and that was uneventful. We see him again in May. Also on Tuesday a woman (Robin) came to our house. Robin oversees the program that helps pay for Amber to go to her special daycare. So far they do nothing else for us, but this program we are in is totally necessary if we are ever to get a waiver. At least that's what I am told. Robin has been very helpful in other ways and seems to be the person that knows whats out there and available for us. When she walked in, she spent the first five minutes remarking how much Amber has changed. She couldn't believe how alert and good Amber looked. The last time she had seen her was right before her g-tube.

On Wednesday Amber's other speech therapist, through preschool, also said Amber is nodding "yes" and "no". This is so exciting. She says Amber is really trying to communicate and just doing great.

We have been hearing Amber say words periodically and they say she is saying things at school once in awhile. So it was a very positive week with everyone getting excited over how much Amber can do!

I found out the Journal of Child Neurology's September Edition was completely on Rett Syndrome. I wanted a copy and have been trying different ways to get it. I called to order and decided against it when I found out it was over $50. Well, Mrs. France, Amber's preschool teacher, surprised me with a copy on Monday!!! Yippee! I am so excited to read it. It is deep reading, but I have started tackling it. I am definitely learning some new stuff. Rett Syndrome is definitely becoming much more well known in the medical community.

Even though Amber is doing well, she hasn't pooped since Monday! (I think) It's one of those things I don't keep track of too much until I notice a problem. I am starting to get a little concerned that it hasn't happened for so long. A rule for RS is never let it go past 48 hours. So I am going to have to do something drastic soon.

I ordered a new program for Amber's communication board. Instead of cartoon-like pictures, these are the real thing. So now I have an actual picture of a bed, hamburg, different kinds of cookies, eggs, yogurt, you name it. I think this will help her in her choice making. I also ordered some connectors to go with her toys and switches. This will enable us to take regular battery operated toys (such as the bubble maker she will be getting for Christmas) and let her hit her switch to turn it on and off.

Let's see, what else. Oh yeah, the week after Thanksgiving I will be visiting a classroom where Amber is eligible to go next year. It is a special needs classroom for K through 2nd grade. This was their first year running. They mainstream the kids in with typical kids for some of the classes, according to their abilities. I can't wait to check that out. She would go five days a week, all day. Also, it is not very far from our home and is still part of our local school district.

I think that's it. I have been at a doctor's office every day this week for the kids. Next week is going to be much more relaxing.

So I'll leave you with this hilarious picture. At Rainbows last night, one of the little boys who really really likes Amber, kissed her good-bye. He really planted one on her and she loved it. She gave him a wet sloppy kiss right back.

Sunday, November 13, 2005 7:52 PM EST

Amber is still feeling pretty bad, but much better than yesterday! Yesterday she cried most of the day and got very little sleep. It was a rough day. She slept pretty good last night, but coughed alot. Today her and Mariah stayed home from church with Daddy. Amber kept him busy filling her diapers. When I got home I asked what he did while I was gone as the house was trashed. He said he had done nothing but feed kids and change diapers. Oh really!!! I think it is good for daddys to stay home once in awhile!

So the cold kicked her butt, but she has actually smiled today and is getting back to her old self. I am thankful she is better and that she doesn't have any seizures when she gets sick. That happens to alot of girls.

Ta ta for now!

*******UPDATE Saturday, November 12, 2005 4:31PM EST

Amber's cold has gotten much much worse. Either that or it is just a brand new one. She has been quite miserable today. I feel so bad for her. Her lips are chapped and her nose is raw. She can't even sleep for very long. Nothing seems to be comforting her. For the moment a Baby Einstein DVD is keeping her quiet for the first time today. I will probably bring out the tough stuff tonight and give her some Tylenol w/Codeine to help her get some much needed rest. I put Vicks on her chest and she seems to really like that. I am putting chap stick on her lips too. I sure hope she feels better soon. Thanks for checking in!
**************************************

Friday, November 11, 2005 10:41PM EST
Gosh I can't believe how time is flying by. Amber is doing well. She has been sick for a couple days with a cold and cough, but handling it ok. She missed school on Thursday because of it. She slept most of the day. Before she got sick, she was extremely happy and alert this week. They told me at school how much she was doing. I can't tell you how great it is to hear how happy and alert she is. Sometimes she is even trying to say words and we can actually make out what she is saying. This week Hayley says she said her name and the same day she said something at school.

Saturday she rode a horse for a straight hour. We are back to our old place, which we like so much better. One hour on a horse for a four year old is quite a bit. I can definitely see a difference in her balance and standing because of it. I am going to BELIEVE she is going to walk some day. I need her to walk. She is so heavy and I try not to stress about what we are going to do as she gets older. She is a big girl and is probably going to stay that way. Many Rett girls are very thin. Actually, most are. But not Amber. I have cut down on her Pedia Sure. She lost one pound. So I'm ok with that.

I ordered a new communication program for Amber. It will enable me to print out actual pictures. So instead of a cartoon character of say, an elephant, we will have an actual photograph of an elephant. I will use this along with the current program we have that is the cartoon looking pictures. Her communication skills are great. She uses her eyes so much and is really moving forward with making choices and letting me know what she wants.



Here is a picture of Amber hanging out with her sisters. They were making a fort in the living room.



And here she is playing with our kitten.

We have a neurologist appointment on Tuesday. I don't imagine anything spectacular will happen there. Just a check up.

Thanks for visiting us.

Wednesday, November 2, 2005 9:30 AM EST

Hi Everyone! It is November! Wow! Amber is doing just great. It's like a new person emerging. The more we let her make choices, the more alert and happy she is becoming. She still has crying spells. I think it is a combination of things. Sometimes her tummy is hurting and many times I think she just can't handle all that is going on around her. The Baby Einstein videos are just wonderful. Also, we have the Baby Einstein CDs and we put headphones on her. Often I lay her down for a nap and play the music quietly. It has such a calming effect on her. I think she gets overloaded and the music helps her gather her thoughts and get back on track. Many times she will get woke up suddenly (I wonder why, when she has four siblings!) and she just can't handle it. Her eyes pop open and I think the noises and the light are just too much for her all at once.



Friday night we went to our Fall Festival at church. Amber got lots of candy and was able to play some of the games. Here she is picking out a sucker. She actually was able to reach over and grab one! We let her eat some of her candy throughout the night and she loved that.



Her friend, Skylar, also came and they got to hang out together.



On Monday Amber's class had a party and they had a little parade and walked around the school in their outfits. Amber was a bunny.



Then on Monday night we went Trick-or-Treating! This was the first time for Amber and her brother and sisters. We always just went to our Fall Festival at church every year and I never really was into the whole Halloween scene. We decided to get wild and crazy this year and do both! The kids had a blast and so did mom! We went to Grandma Bonnie's and walked the whole neighborhood. Amber was so excited from the entire day (party at school, then trick-or-treating) that she barely slept. She was still wired by the time we got home that evening. I put her bag in between her legs and wheeled her right up to each door. She giggled alot and had a smile on her face continuously. The kids got sooooooo much candy. This morning, Amber was making a fuss about something. I came into the room and Mariah was getting into Amber's candy bag! So I snatched the bag and took it over to Amber and told Mariah she couldn't have Amber's candy. Amber started grabbing at the bag and smiling. How cool! I love it when I figure out what she is trying to communicate.

Take care everyone and please sign the guestbook if you haven't in awhile.

Thursday, October 27, 2005 8:30 AM EST

This has been such a tough year and it's not over. Do you ever find yourself just wanting to gain some control over everything and knowing you really aren't in control? I know there are no guarantees and it doesn't matter if you're a good person or a bad person (and who determines who is good and bad!). Stuff happens. All I know is that we must believe in Jesus and make him #1 in our life and he will direct our paths. I realize not everyone reading this has the same philosophy. All I know is I have peace sometimes when I absolutely shouldn't have. It is like a supernatural power. It is during those difficult times when I feel that peace most. I find myself being totally ok, and then right in mid-sentence I can be talking to someone and start crying. I really get quite annoyed with myself. I often think my life is one big drama and everyone is watching on the sidelines cheering us on to keep going. I have to say that if I didn't have Jesus in my life, I would be totally and completely lost. At least I don't have to take all this on and always try to figure everything out. When I come to my senses, I realize that I AM NOT in control, but that God is in control, even if I don't agree or understand what is going on. I have been trying to read with the kids every day out of the Bible. Hayley needs to do this for her class on Wednesday nights and is WAY behind. I can't tell you how many times, what we read pertains to EXACTLY what is going on with us. It is at times like that when I know God is still with us. And the kids see it too.

Aunt Barb, who is my mom's identical twin sister, has had ovarian cancer over six 1/2 years. She is now in alot of pain and it has gotten worse. So we are very sad and that is probably part of all my weepiness lately. Please pray for her in the following months.

One of the kittens died last week. We woke up one morning and he was in bad shape. I have no clue what happened. The other one meowed this loud desperate meow that night and I felt so bad for him. Ever since that first night he has been fine. He seems so happy and just loves all our attention. Well, now the dilemma. We don't want to get rid of him. We have grown quite attached to him and he has such a personality.



Here is a picture of Sam. I put a light bulb next to him so you can get an idea of how really small he is. So now I am going to call the girl who wants him and hope she understands. I hate doing this, but I don't want to make the kids get rid of him right now. They have been through enough. Ok, I'm attached too, but it's for the kids!

Amber has been doing well. The crying is getting better. I have been feeding her table food almost every meal now. I really think the crying might have been because she was hungry. I realize the Pedia Sure should be enough, but she really seems to enjoy food by mouth. She definitely does not like french fries, but loves chili, green beans and yogurt. I have been giving Amber choices as much as possible. I just watch to see where her eyes go instead of waiting for her to touch the item. It is alot easier on her and quicker. She has been very verbal lately and I really try to pay attention to what she is trying to say. At school they say they swear she has said some words. I also feel sometimes it sounds like she says yes to me. Other times she tries so hard to mouth words and I just tell her I know she is talking to me.

Amber got a flu shot on Tuesday. I told her she was going to get an owie. Then she gets the shot and it startled her, she looked at me and I said "You're ok" and she started smiling!! She did not cry! I always tell people she's been in alot worse pain then a shot, so it is nothing for her.

Last night at Rainbows Miss Kristen helped us make shakes using our switch and a blender. Of course, I brought the wrong switch, but we faked it and the kids didn't know the difference. Too funny! Leave it to me to bring the wrong switch. See what I mean? Drama! Amber was about ready to fall asleep and as soon as we started making the shake, she perked right up. We told her she had to show everyone how to do it.

I received the rest of the Phantom Tea Invites a couple days ago. I feel silly sending any more out now that it is the end of October. I am a little ticked it took them so long to get them to me.

I haven't heard any word on any of Amber's poop tests. I still have to turn in three, which I will do today. The whole mucous thing comes and goes.

Thanks again everyone for checking in and if you have never signed the guestbook, please do!

My grace is sufficient for you, for My strength is made perfect in weakness. Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.
2 Corinthians 12:9

Thursday, October 20, 2005 11:20 PM EST

OCTOBER IS RETT SYNDROME AWARENESS MONTH!!

I sent out phantom tea invites to lots of people. You have a cup of tea in honor of Amber, and if you want, you write out a check to the Rett Syndrome Assoc. at the same time. I feel funny sending these out, asking for money, but I can't believe the response so far! I ran out of invites and have called IRSA twice for more.

Amber has started using the computer. She loves it. She has a big blue button she is able to hit. I have a couple preschool programs she is able to do.

I took pictures of all the kids in her Rainbows class, along with her teachers. Also, in her preschool class we made up pictures of all her classmates, and Mrs. France even made up other pictures like the different centers in the room. We will be able to use these pictures so Amber can make choices in what she wants to do. This is exciting. The possibilites are endless. I need to take more pictures of her entire family, including grandparents and aunts and uncles.

It is so neat to see Amber do things. She gets very excited. She starts breathing heavy and raises her eyebrows and looks right at you. It is so much work for her to get her hands to move to where their supposed to go and she tries so hard.

Amber has mucous in her poop again. So I took her to get those tests I have put off. I find out they need four samples of her poop, three samples have to be from three different days. Yeah, like could someone have told me that before I drug her out early this morning? So once I get these samples, I will drop them off. At least all the paperwork is done.

We are starting back up horseback riding at the old place the first week in November. It will run for four sessions, then one week off, then another four sessions. I like that so much better. It used to be ten week sessions. On 10/29 we will go one more time to the new place we had tried out, but that will be the last time.

Wednesday Amber was supposed to go see the Pulmonologist for a check-up. They had also said she could get a flu shot at that time. When they called to remind us of our appt., I asked about the flu shot and they never got any in. So glad I asked! I cancelled the appointment. There is no reason for us to see the Pulmonologist at this time. Everything is fine in that area. Amber will get a flu shot on Tuesday by the health department instead.

Both Kitties will have new homes!!! That was so easy. I won't let them go for at least another month. I can't wait. I am almost disappointed they are both going, but I don't need them, right?

I still haven't heard any word on the walker and I'm almost afraid to call. We also never received our money for the job we did over the summer. I had a dream last week that the check came in the mail and I ran around the yard waving it around yelling. The kids got all excited and were chasing me around, but they didn't know why I was excited. They just wanted to get in on the action. Well, you know how dreams are. Goofy. Let's hope my dream comes true.

I sent letters out to the parents in Amber's Rainbows class and also her preschool class. I thought it would be a great time, being Rett Syndrome Awareness month, to let parents know a little about Amber. Amber so loves the kids and they really love her. Before Amber, I never would have believed it would be beneficial to put typical and non-typical kids together. Now I see how great it is for both. They feed off of each other. I am amazed at how some of these kids really genuinely care about Amber. One boy in Amber's Rainbows class absolutely loves her and kisses her all the time.

I saw a show today about a man who is severely handicap. He can't walk, talk or even use his hands, but is able to use a machine to spell out words by pointing with his head. Actually, Amber can do more than him. When he was born, the doctors told his parents to put him in an institution and that he wasn't going to live long. He lives on his own and has graduated from college!!!! I didn't catch it all so I'm not sure how this guy was able to accomplish all that, but wow! So see, the possibilities are endless for Amber. I needed to see that. It just gets me going. We can never under-estimate what Amber might be able to do. I have learned to watch for the signs she gives as to what she is thinking. Today I told her she was going to wear Tori's coat because I didn't have time to look for hers. She got this big smile on her face and started breathing heavy. So I really talked to her about how much she must love Tori's coat and how nice she looks in it. She just beamed. Then last night in Rainbows, I was telling someone our story about the g-tube fiasco and Amber just started getting all excited and laughing. She does this more and more. It is so cool to see. And of course, she is still laughing when Mariah gets in trouble.

Amber has been doing well, other than the whole mucous situation. Also, she has these crying episodes 2-3 times a day and I can't figure out what is going on. The only thing that seems to calm her is putting one of her Baby Einstein videos in. I am just having a hard time believing those dang videos can stop her from crying. I walk around saying "I can't believe she stopped crying." I honestly believe when she is having these episodes that she is in pain. She arches her back, kicks her legs and has genuine tears. I usually try all kinds of things and then remember, oh yeah, the video! And then the video goes in and she's all better. I don't get it.

Again, thanks for the guestbook entries. It is so cool to see who has visited us. It really does mean alot to me.

The God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.
1 Peter 5:10

Thursday, October 13, 2005 9:34 PM EST

Amber seems to be up and down these days. More up than down. Monday night she threw up. She wouldn't stop crying so I just put her to bed and she immediately stopped crying. Sometimes I think she just needs to get away from everything and I forget that. She loves her bed so much. Monday she must have been feeling very bad because she went right to sleep. A little while later, Hayley heard her gagging. I ran upstairs and got an extension in her g-tube and she threw up, through her g-tube that is. She had the fundo surgery so she is unable to throw up. This was the first time this happened. She was fine after that and went right to sleep. Pretty crazy to have to throw up that way. It occurred to me that it was alot easier than making a mess all over, like most kids do. That's my girl!

This morning Amber woke up with a bad cough, so I gave her cough medicine, which seemed to really help, but made her sleepy. She still has a runny nose, but seems to be getting better with everything. Also, she is still taking her antibiotic.

After Amber's horseback riding on Saturday, she seemed to really be twitching, like she was having a seizure. But then it seemed to go away. Since then I have been noticing her left side twitching once in awhile. I am hoping this is nothing, but I am watching her closely. She stares sometimes when she is doing this so I am wondering if she is on the verge of getting some seizures. We have been doing good for so long. I hope I'm wrong.

Kitty Update! We saw the mom sitting in the backyard this morning so I put the meowing, very hungry, kittys at the back door in their box. The mom immediately went over to them (I watched from a window), sniffed a little, then took off! Bad mom! The mom doesn't look to be even a year old so I think she is a teenage mother that doesn't know how to take care of her kids. So back in the house they are. They are doing well and are starving for attention. They love to be held and purr lots.

Thanks for visiting us and everyone who has signed the guestbook. I check every day to see who has been here!

Monday, October 10, 2005 9:23 PM EST

Amber was so miserable today. She has a bad cold and cough. The only thing that seemed to comfort her was sleep or me holding her. I also have a cold and sore throat, so we were miserable together.

Amber now weighs 38 pounds. WOW! So I think I am going to cut back on the Pedia Sure a little. The extra weight certainly won't help her walk any.

We tried out the new horseback riding place. It was nice. Also, I got a letter from the old riding place and they are back in business! So now I have to make a decision as to where we want to go.



Here is Amber on their play horse before she rode the real thing. She really enjoyed this.

Over the weekend we heard meowing in the garage and found two kittens up in the attic part in a box with junk in it. We left them alone after seeing what all the commotion was. The next day I went in to check on them and heard nothing so I brought the box down and they weren't moving at all. They were cold and hard and barely breathing. So being the animal lover that I am, I couldn't just leave them so I brought them in the house, fed them and put them on a heating pad. They are doing fine now. Anyone want some kittens? If we can't find a home for them, we will probably let them hang around outside, but definitely not inside. Hayley and Tori just love their new play toys and love taking care of them. I am guessing they are just over a week old. We still haven't seen the mother around. They love to be held and they have even started purring.



I know this isn't a great picture, but I didn't want to disturb them since they don't shut up when awake. I know, this is the last thing I need to be taking care of, but I couldn't just let them die. So I don't want to hear about it!

Friday, October 7, 2005 4:49 PM EST

OCTOBER is Rett Syndrome Awareness Month!

I ended up taking Amber to the doctor. She sent out for her stool to be tested to see what is going on with her. Also, I have to take her to a lab for more tests, which I'm not real good at following through with. She prescribed antibiotics anyway. Amber's butt was pretty red from the abcesses she keeps getting. Two days of the antibiotic and her butt is looking good! We should have started her on antibiotics a long time ago.

Last night the girls asked if they could feed Amber. They love to do it and have gotten pretty good at it. A little while later I hear "Mom, Amber's g-tube fell out!!!" The balloon was completely deflated. This is what holds it in her belly. I tried to fill it back up and realized there was a hole in it!! Can you believe I had another back-up g-tube here??!! So we went through two g-tubes in one week. Now I wish I hadn't put the new one in on Monday. Anyway, I finally figured out what happened. The girls decided to do things differently. They had seen me use a syringe before. But they put the syringe in the wrong spot. So they were trying to feed her through the hole where the balloon is filled and, of course, the balloon busted!! I was so furious and they were so scared and Amber was laughing and squealing the whole time I was yelling. She thought the whole situation was a riot. She really seems to enjoy it when her sisters get in trouble. Today I had to call the doctor and the nursing service that provides the g-tube and tell my little story. How embarassing, but I think everyone had a good laugh. They told me they have heard stories crazier than mine. So now we have to get ANOTHER g-tube for back up. This will be our fourth one in six months. We are only allowed three in one year(insurance says). So I'm not sure what is going to happen with all this, but it sounds like we will still get another one paid for even though we have passed our limit. Someone told me one day I will laugh about this. I think I am already seeing the humor in it.

Thanks for checking in!

Tuesday, October 4, 2005 9:48 PM EST

Amber has been up and down ever since Sunday. She cries alot and then can be happy instantly. We have played her Baby Einstein videos far more than I care to. They sure do calm her down. It sure is funny to have her crying, put the video in, and then watch her stop in mid cry, look over at the tv and start smiling. I wouldn't believe it if I didn't see it myself. Usually towards the end, she will start getting cranky again. Or, if we're lucky, she will be happy for an hour or two.

Yesterday I dropped Amber off at school. Soon after I received a call that her g-tube had completely come out!! So I hurried back to school, thinking I would put it back in. But you can't just put it back in as the balloon has to be deflated first and I needed a syringe to do that. How it came out, no one knows. I know this can happen. We've just been lucky so far. So I ended up taking her home and put a completely new one in. The old one looked quite yucky. I knew I had to hurry because the surgeon told me the g-tube can never be left out for very long because the hole would start closing up. By the time I was putting the new one back in, (about 20-25 minutes later) the hole had closed!! I didn't expect it to REALLY close that quickly. The surgeon had said it is a wound the body is continually trying to heal. I pushed the g-tube through anyway. It was either that or take her to the hospital or doctor's office and by then the hole would really be closed up. It reminds me of having your ears pierced and not wearing earrings for awhile and the holes closing up, but not completely. So after that, I just took Amber back to school and she was good to go. Whew! Made it through that one. I was a little nervous about the whole thing, but it really wasn't that bad. The surgeon prepared me for it all. I just had to remember what to do and not panic.

Today Amber was definitely not herself. She seemed sick. She cried most of the morning, but seemed to do ok at school, but not her usual happy self. Then she slept quite a bit this afternoon. I was gone this evening. Before I left, I changed her diaper and there was lots of mucous in it. This has happened before when she has been cranky. If she isn't better by tomorrow, I may call the doctor. When I got back home she was extremely happy and alert. Just like her old self. So hopefully she is all better.

I got the paperwork in for Amber to start horseback riding, but we kept playing phone tag and I think I missed the deadline. Anyway, the lady called me today and they have an opening for just three weeks on Saturday mornings. This is a new place and I am excited to see what they have to offer. So Friday night I get to go to a girls sleepover at church with Hayley and Tori, which ends at 8am on Saturday, and then I have to have Amber to horseback riding by 10am.

One more thing. We went to the wedding Saturday night. Karl was sitting down at our table and kindof missed his seat a little and almost fell. Amber laughed hysterically. It was SO funny. Again, that girl knows exactly what is going on.

Friday, September 30, 2005 10:47 PM EST

Howdy. We are still happy campers here. Amber has started grinding her teeth. She did this over a year ago, then stopped. It isn't continual, but it's there. This is common in RS. We did go see the surgeon yesterday. I decided we probably should. We arrived at 2:40 pm and left at 3:07 pm. Wow! That is definitely a record. And Amber slept through the whole thing. I just like our surgeon so much. He answered all the questions I could come up with. We aren't going back to him again unless there is a problem. He knows how busy I am. He has left it up to me when I feel the need to change her button. He says if I'm not comfortable doing it myself, just come in and he will. I think I can do it though. Eventually the balloon will wear out (this holds the g-tube in her body) and she will need a new one. Also, as she grows she will need larger ones. I currently have two on stand-by.

Last weekend we went to a wedding. It was Karl's cousin's son. So what does that make us? Well, anyway, it was a fun time. It has been awhile since we have been to a wedding.



The girls enjoyed dancing and, of course, Tori asked if Amber could dance too. So she took little Amber out on the dance floor in her wheelchair and the girls all danced together. Leave it to Tori to be thinking about Amber.



While I was sitting at the reception, a woman came up to me and told me how beautiful Amber was and she hoped I was accepting of our situation. She told me she has a friend who has a handicapped daughter. I told her that we were very accepting of Amber. I wish I had said more. I am sure that took alot of courage for that woman to come up and say that to me. She just took me off guard. I find it interesting the different ways people react to Amber. I am now on the receiving end. At one time, not very long ago, I was just like everyone else and wasn't a part of this so-called handicap world. It still feels strange.

Anyway, we go to another wedding tomorrow night! And this time, the girl getting married was the flower girl in OUR wedding! Oh my gosh, now I really do feel old!

Saturday, September 24, 2005 7:51 AM EST

Hi Everyone! Amber is still doing great. Wednesday and Thursday she was a little off and cried quite a bit. I think she was a little sick. Mariah (2 years old) was throwing up all day Thursday and I had a bad cold. So I think Amber had something going on with her, but yesterday she was back to her giggly, happy self. She has cried quite a bit this morning. I am hoping it is just a little gas in her tummy. The only thing that seems to calm her is her Baby Einstein videos.



On Thursday, it was our 15th Wedding Anniversary!! 15 years!!! It is so hard to believe it has been that long. Karl and I met in September 1989 and were married just one year later in September 1990. The first couple years were rough. We were young and dumb. But now we're old and smart! ha ha ha ha We have had to overcome many obstacles and I know for a fact we wouldn't be together if we hadn't allowed God to be the center of our life and marriage.




We went to the grocery store this week. Amber just loves going places. It's the simple things that make her happy. I am sure people were wondering who the fool mother was taking pictures of her kids in a shopping cart.

No word on the walker situation yet. Also, no word on our $$ owed to us. The lawyers are communicating and it is looking very promising for us. I will tell more when I know what is going on.

This week Amber has a doctor appointment with the surgeon who put her g-tube in. I think it is just a check up. I am going to call and see if we can get out of it since she is doing so well.

Thanks for stopping by. Anyone new to our website, please sign the guestbook!

Saturday, September 17, 2005 7:24 AM EST

Thanks for listening to my little temper tantrum. I am doing better, but still not ok. I don't think I will be ok until we get our money for our large job, and nothing else will do!



Amber has been doing extremely well. She just seems so alert lately. Her eye contact is awesome. One day this week her sister, Mariah, (2 years old) was getting in trouble and I look across the room and Amber is just laughing away. It is so funny to see. I'm mad, and then I look over at her thinking it is the funniest thing.

Amber got her picture taken at school on Thursday and we held up two dresses for her to choose from. She never actually used her hands to select one, but she did keep looking at one. So finally I held it up and said "Oh you want to wear this dress!" and she just got this big smile and looked up at me. That was cool. I always say she knows exactly what's going on, but when she does something like that, it really reinforces what I already know.



Here Amber was sitting on the couch watching tv and when I came out to check on her, she was trying to get off the couch! She was so proud of herself.

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So then I stood her up for awhile. She is not always able to do this.



Here is Tori reluctantly standing in our new walker that I don't like. And this is Amber in her loaner walker. There is just no way the new walker will be beneficial for Amber. It is too large. For someone who is unable to walk and doesn't have much strength, she needs something that moves quite easily. Amber is able to stay in her walker for up to 1 1/2 hours now! She is able to move backwards in it as her toes touch the ground. When I make it so her whole foot touches the ground, she gets lazy and is unable to move around. The situation is still in limbo. They are trying to get this worked out so I can get what I want without there being any extra money involved. So I will wait and see. In the meantime, I am going to write a letter documenting all this. It's too bad, because it is basically my word against someone elses. I will definitely learn from this mistake!

Amber woke up at 4am this morning, giggling and laughing hysterically. She is beyond hyper and just so alert and happy and babbling. She has a slight fever and she has about 4 of the abcesses (sp?) on her butt again. I will probably end up taking her to the doctor. That's not an area that is able to stay clean very well so it will probably get infected. No one seems to be able to tell me why she is getting these. It is a strain of bacteria. I am going to start washing her with antibacterial soap and hope that will help.

Wednesday Amber started her Rainbows class at church with Miss Kristen. I forgot to take pictures! Of course, Miss Kristen has lots of ideas for her. We are going to take her walker there (the one I have on loan). Miss Kristen said the kids always want to push Amber's wheelchair so she came up with the idea of taking pictures of each of the kids, then letting Amber choose who gets to push her wheelchair. Cool!

I have to send in the papers for horseback riding. I think it starts next week. It will be interesting to see how this program is different from our old one.

Please pray for us and for this man that owes us money. This is really hurting us and quite a strain.

Thanks everyone for your words of encouragement lately.

And a special thank you to Sarina

www.caringbridge.org/pa/sarina_d/

for helping me get some different music on Amber's web page. She was very patient with me and deserves an award. Because I couldn't figure it out, she had to do it for me. I know you had a rough day yesterday. Thanks Sarina! You made my day!

Tuesday, September 13, 2005 8:35 PM EST

May I complain a little? I won't mention names or companies, but now I know why he wasn't too happy with me when I said it was the wrong walker. I received a call yesterday and there is a restocking fee, plus shipping and handling. Supposedly, I stated I wanted an outdoor walker and I wanted the next size up from the one I have here at home. (You know, the one that is too big for Amber. Makes sense, right??) I honestly don't remember what I said six plus months ago. All I know is I looked one up in a catalog and showed what I wanted. I also got the item # off the walker of one that was at Amber's school. (The same one that was in the catalog.) I think I was asked if I wanted the one that can also go outdoors and I said sure. (Like maybe the wheels would be different.) Not knowing it completely changed the walker that I wanted. And I mean completely changed it. OK, that aside, I went and looked at it again today and had Tori (7 years old this month) sit/stand in it and it fits her perfect. Yes, it can be adjusted, but come on! Amber is four years old. Needless to say, I am in a dilemma. Do I accept this walker that I do not want, but insurance pays for, or do I have it sent back and then fight about the restocking/shipping fee. I am so sick of fighting about stuff. I guess I can't figure out how I show someone a picture of what I want and I get something else. If I say sure I'll take one that goes outside, was I supposed to know it would be an entirely different style walker?? The walker I want has five wheels and the walker we got has four.

So on top of all this, we own a construction business and did the largest job we have ever done this summer. And we never got paid! So we had to get an attorney and it is such a big mess. Then our trucks kept breaking down the last two weeks and the gas prices went sky high. STRESS STRESS STRESS! I am trying to stay sane right now and am holding on to life by my knuckles. I am not sleeping well and crying lots. Sorry to be so brutally honest, but I think I needed to vent. I am sick of trying to put on a happy face and act like life is fine because it's not! So if you ask me how I am, I will tell you I've been better!

Other than that, Amber is doing good and gets to start Rainbows tomorrow night with Miss Kristen.

Thanks for listening. I know God is in control of everything and I am just waiting to understand it all. I am feeling sorry for myself thinking about the last year and all we have been through.

Tami

P.S. I have to laugh because I only wrote one sentence about Amber. Sorry Amber!
---------------------------------------
Update Wednesday, September 14, 2005

And this is how God works. I checked my email this morning and this was in it. I belong to the RettNet where I am in contact with other mothers who have daughter's with Rett Syndrome. This was wrote by a mother who also has a lot of kids and her daughter's name is Amber too! So I didn't have to change a thing. Thanks Jackie, I needed this!! Now if I could just stop crying....

What Rett Syndrome brought to me

Rett Syndrome brought endless nights of worry,
Hours in a doctor's office,
Cabinets full of medicine,
Dents and scratches in walls from needed equipment,
Bills stacked high,
Mounds of dirty laundry from diapers that leak,
Teachers that I have to teach,
Therapists that make me crazy,
Strangers that stare,
and life that sometimes is too hard to bare.
Then there is Amber......
Amber brought me the sunshine on a rainy day,
Flowers in the winter,
Laughter when nothing seems funny,
A passion for life when life isn't fair.
An unspoken language,
Patience, understanding, & commitment.
Amber taught me faith, love, & honor...
but most of all she brought me purpose.
Amber has Rett Syndrome.
An angel is what Rett Syndrome brought to me.

Jacklyn Gant (Amber's mommy)

Friday, September 9, 2005 12:37 PM EST

Well, we didn't get the walker. Oh my gosh it was huge. It is made for outdoor use and that's not the one I want. I tried to take a picture of it, but my batteries were dead. It wasn't the right model and it wasn't the right size. So it will be quite awhile until we get the correct one, I'm quite sure. The good news is, and this is real good news, I am able to adjust the one we have on loan right now. The guy showed me how. We weren't adjusting it correctly, so actually the one we have does fit Amber!! The new one we will get will be the next size up. So I guess it wasn't a total wasted trip today. I can honestly say I'm probably not their favorite person over at the equipment place and I don't think he was too happy with me. I'll just leave it at that. I say this with a smile on my face. I can't help being a little pushy and getting what I want when it comes to Amber. I can't wait to get Amber in her walker we have here now that we can adjust it. She is at PPC, her special day care, today, so it will have to wait until tonight.

Miss Cathie has been taking pictures of Amber at school and then emailing them to me.



Isn't technology great?

Amber is doing well this week and I haven't even been giving her any reflux medicine. Hmmmm. I missed a few doses, noticed she wasn't cranky and then decided to just quit it altogether. I am always trying to keep her off the meds, if possible.

Well, we got quite a shock yesterday. The place where Amber goes horseback riding, Vail Meadows, is closing down!!! They lost their corporate sponsor and don't have enough money to run. They said they hope to get help and open back up in the spring. They also lost alot of volunteers because of the gas prices. I am so disappointed and felt very bad for the people there. They are so sad because they believe so much in their program and so do I. So I couldn't get on the phone fast enough today to call the other place in town, Serenity Farms. They are sending me paperwork and have an opening in two weeks. They are more expensive, but at this point I don't care. It is only a four week session and then they break until April. I guess they have other programs during the winter, but not actually riding the horses?? I will find out more when we go.

Amber starts Rainbows at church with Miss Kristen as her aide on Wednesday evening. She actually went to the rainbows class this past Wednesday with me as her aide. There was some confusion about when it started and I had no clue until we got there.

We are continuing to pray for the victims of the hurricane down south. Sure makes me appreciate my bed at night and shower in the morning.

Tuesday, September 6, 2005 9:57 PM EST

Amber is doing well again. Whatever her crying problem was, it is now gone. A sore throat has been going around in our family, so maybe that was it.

We had a very relaxing weekend and had nowhere we had to go. That doesn't happen very often. Amber hung out with her sisters and even played jump rope with them.



They tied the rope to her wheelchair. Tori is in the middle and Hayley is on the end.

Then she took a ride with her brother, Jay, on the go cart.


He goes quite fast with her and she loves it!

Amber is doing great at school.



Here she is with Miss Judy.



And here she is playing with another classmate.

Amber's pony walker is in! We have an appointment Friday morning to get fitted for it. I am assuming we get to take it home then. I'm counting on it! I have this vision of her walking all around the house in it. Oh I hope I'm right and I'm not disappointed. It would be so cool for her to be able to go in the room she wants to go in. What if she were hungry and could go to the refrigerator. The walker would just strengthen her muscles and give her a feel of what it is like to actually walk. I hope this works!

Tori, Amber's 6 year old sister, has a birthday this month so I took her to Build-A-Bear. She was able to pick out a bear and even got a birth certificate for it. She had to name the bear and guess what she named it....Amber! She didn't even hesitate when I asked what it's name was. I almost said something and caught myself. That really was what she wanted to name it! Then for school today she had to write five words out of the dictionary and wouldn't you know one of them she chose was the word Amber! She sure has been focusing on Amber alot lately.

That's all for now. As always, thanks for checking in on us.

Wednesday, August 31, 2005 8:22 PM EST

Amber did alot of crying yesterday after school. She was very sad and I don't think it was a pain cry, but a sadness cry. I rocked her and played her favorite videos. She totally enjoyed our time together. She would just look deep into my eyes and I would hold her tight. Then she would get happy, and then all of a sudden she would start crying hard. It was so strange. Almost as if she remembered something bad and it upset her. I do think she was overly tired from getting up early, not much of a nap, school and getting PT at school. Then this morning she woke up crying, which is really unusual. She is usually very giggly and happy in the morning. But then she was fine the rest of the morning and took a couple naps. This afternoon she took a nap right after school, but then woke up crying. This time she was definitely in pain. She is having that silly old pooping problem again. She still hasn't gone today. She goes in and out of being extremely happy, to extremely sad. Possibly going to school again is just overloading her until she gets used to it. She does fine at school, it's just when she gets home she hasn't been ok all the time.

So we saw our new doctor, Dr. Fay, yesterday.



She was very nice and spent about an hour with us. I enjoyed how friendly everyone was and didn't feel rushed. The office was in a somewhat secluded area and they didn't appear to have lots of patients. I notice all these little things. Guess you get that way when you go to the docs all the time. Dr. Fay will be our doctor that oversees everything. For instance, she will sign all the papers I need for school and whatever else. Believe me, there's alot. I guess you could call her our primary care physician.



Here Amber is getting poked and prodded by the doctor. She was quite happy to get the attention.

Last night I went to the meeting about the waiver program. It was basically for the people who already have the waiver! I still learned a little about what is going on and it doesn't sound good to me. It is all very confusing and even the people who are in charge for the county and/or state don't know what is going to happen! Anyway, I met another mom from Perrysburg who has adopted four special needs kids. Wow! I am sure I will run into her again some day. If nothing else, I left knowing that I need to find out who my Service Coordinator is who I am told I have, but didn't know it. How's that for being informed! This is the person that will send me to the right agencies, etc. This is why I go to these boring things. I usually find out something that someone somewhere should have told me before now! And I didn't actually learn this from the people putting on the meeting, but a woman that works for the county and happened to be sitting next to me! I have learned to keep my eyes and ears open and grab every handout and talk to anyone I can.

Saturday we lowered Amber's seizure medicine just a little. She has been shaking a little more than usual and her levels are high (yes I finally went and got them checked about two weeks after I said I was going to) so I asked our neurologist if we could go down a little. I really don't expect there to be a problem with doing this.

On Monday we went to Speech Therapy. This is our new day for Speech since school has started. Amber was able to pull puzzle pieces out. They are the board puzzles and they had handles on each piece. Too cool. Another great idea from Cecelia (our therapist). I couldn't wait to tell Karl about it so he went out and sawed off some dowl rods (no idea how to spell that) so we could make our own, but they weren't exactly what I wanted. He tried! I think I will just go buy some at a craft store. I just love when we get new ideas for Amber.

So we have no horseback riding this week. Yippee. I am looking forward to the break. I have decided to only go to OT (occup. therapy) every 4-6 weeks and I may just do PT (phys. therapy) every couple months. She gets all these therapies at school once a week and with the gas prices, I need to start cutting back some. I can do all these things at home.

Hope all is well with you all. I just LOVE your messages in the guestbook. I am still wondering if there are some of you that have never signed, but read our journal. hint hint. Take care everyone.

Sunday, August 28, 2005 10:58 PM EST

Today was such a great day. There was a special speaker at church this morning for our Friends and Family Day. The service was outside under a large tent. The speaker, Jeff Allen, is a Christian Comedian. WOW was he good! I laughed so hard I cried. He talked about PMS, menopause, marriage, raising teenagers and young kids, and a happy wife makes a happy life. And then he got real serious and talked about how he was an alcoholic and how he was searching for "the meaning of life" and why are we here and what is life all about. It was so moving. I missed the last five minutes thanks to Miss Amber having enough of the service. As I stood outside the tent with her, I was amazed that everyone was hanging on this man's every word. Some people were standing in the back with their attention just glued to the stage. It was such an awesome service. Amber got her act together and then we were able to eat lunch under the big tent.

So this week is a busy one. Tomorrow we have speech therapy, along with Amber attending preschool Mon-Thurs in the afternoon. On Tuesday we see Dr. Fay, our new doctor and then I have to go to Bowling Green for a talk about waivers in Ohio. Boring, but a must, so I know what is going on. This is all in addition to the other various activities the other kids have. We get a break from horseback riding this week though. A new ten week session starts the week after.

Tonight when putting Amber to bed, her sister, Tori, (6 1/2 years old) got very talkative about what a pretty sister she has. So I asked her what she really thought of Amber and I would write it on Amber's web page. She said "My sister is very pretty and she is my most favorite sister. I especially love it when she gives me a funny smile. I think she is very pretty and I love her very much." Then Tori told me I should probably have a piece of paper to write that all down. Tori sleeps with Amber at the other end of the bed. Often I find Tori asleep at the same end as Amber with her arms around her. I am beginning to realize the two of them have a very special bond. Tori is always thinking about Amber's comfort. When Amber gets home from school or day care, Tori often asks if she can take her arm splints or her shoes off. Or she will tell me she thinks Amber is thirsty. Amber is so good for all of us.

Please sign the guestbook you people who read this and never sign!

Friday, August 26, 2005 12:29 PM EST

Amber's first day of school went very well. She had lots of fun and was very happy. I only wish I had been there to see it all. I decided to take her picture when I picked her up, instead of when I dropped her off, but this is how I found her.



They must have worn her out. Right now there are only six kids in her class, her aide, the teacher and assistant teacher. Not bad. Unfortunately, there will be more kids as time goes on.

Amber has had a rough day today. Maybe getting out of her routine? Also, she refuses to take a nap. Hopefully she will get out of her mood.

Tuesday we go see Amber's new doctor.

Really, nothing else going on. And that's good news!

Sunday, August 21, 2005 1:53 PM EST

Everything still going well here! I was able to get on loan a couple toys from PPC, Amber's special day care.

Amber just loves them and so does Mariah!

Also, I have been going a little crazy with velcro. I am now putting velcro on all Amber's toys so they can stick to her wheelchair tray. You can see how excited she gets when she gets to play with the different toys. The two toys we got only work when Amber has the large button pushed down. Amber has figured out she can't just tap it, but has to hold it down for the music and vibrations to continue.

The OT session went well. I got some cool ideas too. We were given a piece of plumbing tubing (I think that's what it is) to put on the handle of a fork or on a pencil for Amber to hold on to. I haven't tried it yet, but I think it will help her practice holding things. This week I let Amber try and feed herself. I velcroed a bowl to her tray. She made quite a mess, but was able to get some food in her mouth.

On Saturday morning Amber went horseback riding. Amber has met a new friend. He is one of her side walkers and is just awesome. This is another one of the people that has come into our life that goes above and beyond what is required.



He is always talking to Amber and just so into her. Here he is sitting on the floor with her, waiting while a storm passes. She wasn't able to ride her horse the whole time on Saturday because there was thunder and lightning, which will spook the horses, not to mention we were in a steel building. So he sat with her the entire time while we learned about the horses and waited to ride. Can you believe I have forgotten his name. I am terrible with names. He is high school aged and is such a caring person. I have to wonder, what makes a person be so caring at such a young age.

I am working on getting some different music on this page. I have some songs I want to put on that make me think of Amber so stay tuned!

Amber's first day of school is Thursday. I will be sure and take lots of pictures. Her brother and sisters will also be starting school this week (homeschool). Does this mean summer is about over?? I don't want it to end!

Monday, August 15, 2005 11:55 AM EST

Amber is still doing great. Tomorrow we have our first Occupational Therapy at 3pm, then we meet Amber's new preschool teacher at 5:30 for open house. On Wednesday it is orientation for her preschool. On Thursday we go to Speech Therapy and horseback riding. The preschool teacher did end up calling last week and we were able to talk for awhile. She has five kids and this is her first year teaching.

Jay made it through Royal Ranger Camp, otherwise known as Junior Boot Camp. On the way, I was stopped for speeding, but didn't get a ticket. Then a few minutes later I hit a bird and it stuck under the wipers the rest of the trip! Gross! I have hit two birds in the last month. What the heck is going on?? Anyway, when we finally were able to hug after the ceremony, Jay ran to me and we just held each other and cried.



Jay seems to have matured from his experience and he's glad he stuck it out. It was probably the hardest thing he has ever done in his short 11 years. What an accomplishment! There were only two other boys from our church that went. Jay was the only one of the three that completed all the requirements and earned all his badges. We are so proud of him!

Thursday, August 11, 2005 1:56 PM EST

Amber is doing fabulous. She is so happy and full of personality. The whole pooping thing is under control for the moment. I have the meds at just the right dose. I am always fine tuning them to make sure everything is coming out all right. Get it? Come out all right?

We got in to Dr. Fay! Yippee! Dr. Nagel called and got us in. So I called today and they said they weren't accepting new patients and I said This is for Amber Heiss. So they had to check and came back and said yes indeed Amber Heiss can come on in! So our appointment is August 30 at 11am. This will be our new pediatrician. Right now I just take Amber to an urgent care when needed. She is in Swanton, which is on the other side of town, but hopefully it will be worth it and we won't be going there all the time.

Amber's first day of school is August 25. They have us set up for the afternoon class, but I want morning, more for scheduling, than any other reason. Also, Amber tends to be sleepy in the afternoon. I have left a few messages, but so far the new teacher hasn't called us back. If I don't hear from her soon, I think I will pop in for a surprise visit at the school. This poor teacher is going to have to measure up to Miss Kristen so I am anxious to meet her.

This week Amber's brother Jay is at Royal Ranger camp. It is about 2 1/2 hours away. Royal Rangers is a program at church, somewhat like Boy Scouts. This camp is not all fun and games, but him learning alot of survival skills, wearing a uniform, learning to become a "man" and sleeping outside (in this heat!!). We got a call twice last night that he was quite homesick. By bed time they said he was doing better so he never knew they called us and we never talked to him. I was just sick about it, but I am feeling better now. No news is good news, right? He only knows two other boys there. We will be going to his awards ceremony on Saturday morning at 8:30. Can't wait to see him. Oh dear. He just called, literally as I was writing this, and he is quite homesick. We are making him stay there and hope this is the right decision. We are totally agonizing over this.

Thanks for checking in again. Please sign the guestbook if you haven't done so in awhile. I want to know who's out there!

Tuesday, August 9, 2005 5:21 PM EST

Amber had a great 4th birthday! She shared her party with her sister Mariah, who will be two on Saturday




Her sisters helped her open her presents.



She got a riding helmet.


Now she won't have to use the ones at the riding stables that are filthy!



It really was a fun night. There was alot of commotion with two little ones opening presents. Amber stayed awake until 11:30pm. She was so excited and had so much fun.

I had wanted to get pictures of all Amber's grandmas and forgot. She has four. I didn't take near as many pictures as I would have liked. There was just so much going on. Anyway, everything went fine. I find that I'm not nearly as stressed "entertaining" anymore, thanks to Amber. I can remember a few years ago, I would have worried about every little thing and Amber has helped put things in perspective. The little things in life just aren't worth the worry.

Today Amber took a long nap. Then she fell off the couch onto our hard wood floor. I didn't even know it until I found her laying there. She thought it was quite funny. I don't know how she fell without hurting herself or making any noise. A little later, we went out for a swim in our pool. She is getting so good at sitting in her raft. Her sister Hayley kept swimming underneath her and grabbing her legs and she was laughing hard. It was too cute.

If you get a chance, please visit Amber's friend's website. It is www.caringbridge.org/oh/skylarbaker. She is really having a rough time lately. They can't get her seizures under control. How frustrating it must be. This has been going on a long time. It is very hard to watch your child go through so much and be on so many drugs and still not be able to get things under control. I feel very blessed that things are going so well for us right now. At any time, there could be a change. There are no guarantees the medications will work forever. Please say a prayer for them as she is a single mother handling this on her own.

Thanks for your birthday wishes everyone. I just looked over at Amber and she looks so grown up! She really is a big four years old now!

Saturday, August 6, 2005 7:28 PM EST

The most amazing thing happened to me today. I went to the grocery store and was checking out. While in line, there was a girl standing in front of me wringing her hands. My heart just started racing. I finally got the nerve up to ask the mother if her daughter had Rett Syndrome and she did! I was so excited. I can't tell you what that felt like. It's not often I see girls with RS at a grocery store! So we talked while in line. This girl looked like she had autism. She walked so well and she even smiled at me a few times. I just kept staring at her and telling the mom how exciting it was for me to see her walking and how good she looked. She had eyebrows and eyes just like Ambers. I had a feeling the mom wasn't interested in exchanging phone numbers. She just said good luck to me when she left. I couldn't help but cry when she walked away. I was holding it in while we were talking. I so wanted to hug her daughter or do something, I don't know what! It was the weirdest feeling seeing that girl. Unfortunately, I didn't have Amber with me.

Amber seems to be doing better, but still has her moments. I think her constipation has been a problem this last week. I never did get her ears checked. I really do need to get her levels checked this week though.

Amber's birthday is Monday! She will be a big four year old!

Tuesday, August 2, 2005 9:56 PM EST

Amber hasn't been herself since Sunday. She is very moody, she can go from laughing to crying very quickly. She also seems very pale at times. I suppose if this goes on much longer I will take her in to have her ears checked. That's always a good start. Also, I need to get her in to have her levels checked to make sure the seizure medicine isn't too much for her.

Today the kids decided to make Smoothies. Amber got to push her frog switch to make the blender go.



Miss Kristen visited us tonight. Miss Kristen is Amber's preschool teacher from last year. She has moved to another school district.




She brought over a toy called an All-Turn-It and the kids were able to play Twister. Amber was able to hit the switch to tell the kids where to put their hands and feet.

Amber got the kids all tangled up.

I made lots of phone calls today. I called Columbus to make an appointment with Amber's old doctor, Dr. Ratliff-Schaub. Our neurologist, Dr. Nagel, said we need to find a doctor here in Toledo to replace her, even if we visit her in Columbus. I tried a doctor that is highly recommended, Dr. Lori Fay. I hear she used to work with Dr. Ratliff-Schaub years ago. She's not accepting new patients. I am sure she is getting quite a few calls since Dr. Ratliff-Schaub left. So now I am seeing if Dr. Nagel can put a word in for us, which is what I am really hoping for. If that doesn't work, I am considering asking Dr. Ratliff-Schaub to try and put a word in for us. AND if that doesn't work I am going to write a personal and confidential letter directly to the doctor and see if that will work. I really want to see this doctor and I'm not ready to give up that easy. I have heard good things about her. There aren't any other doctors left in Toledo that specialize in disabled children. That seems crazy. We're not that small of a city.

I also called the Therapeutic Listening place. They never received an order, which means we may not have received the scholarship I was hoping for. So I need to make some more phone calls. I sure hope it will go through eventually. I am anxious to get started on using it.

Thanks everyone for your wonderful guest book messages.

Sunday, July 24, 2005 7:53 AM EST

Everything is still going great around here. I think this is the longest time we have gone without something going on. Let's hope it stays this way and we can just enjoy life.

Amber just seems to be blossoming. She tries so hard to talk to us. The communication pictures we are using really are helping her realize she will be able to communicate with us. I don't think she realized that was even an option before.



Amber now helps me "do dishes" and she helps open cans. She gets so excited doing these things.



Here Daddy was giving her kisses and she was squealing and giggling. It is such a neat sound to hear.



Yesterday we met with our Care Group from church at a nearby park. Amber enjoyed the swing so much.



And then she rode with mom for a little bit. But we didn't do that too long as mom almost flipped us over.

Next week we have no doctor appointments! We are meeting with a woman, who comes to our house, with the Bureau of Children for Medical Handicaps on Tuesday. Also, our local zoo is having a disability fair on Tuesday. I would really like to go, but won't if it is extremely hot out. We went last year and they have all sorts of tables set up throughout the zoo with things that are offered to the disabled.

I was reading a book this week and I read something that really made me think about the struggles we sometimes go through. Elisabeth Elliot wrote:

Heaven is not here, it's There. If we were given all we wanted here, our hearts would settle for this world rather than the next. God is forever luring us up and away from this one, wooing us to Himself and His still invisible Kingdom where we will certainly find what we so keenly long for.

I know things that happen to us don't always make sense, but this paragraph reminded me of the big picture. And then I realize if it weren't for Amber, how different things would be. I wouldn't have matured in the way that I have and I wouldn't have met some of the people that I have met. Also, my eyes wouldn't have been opened to the whole disabled world. There are so many good things that have come about that had you asked me a couple years ago, I wouldn't have thought possible. I wouldn't have Amber any other way. For her sake, yes, I so wish she could be "normal" like us, but really, she is happier than any of us. Think about that. She is more content with life than we are. This child is teaching our family and friends a different way. Her ways are not our ways. She reminds us of what is really important and not so much the things we tend to look at as important. How great is that!

Thanks for checking in on us.

Tuesday 7/19/05 12:33 pm

Hi Everyone! Just love the guestbook entries!

Thursday we saw the GI doctor. That was pretty uneventful. On Friday we saw the neurologist. That also was pretty uneventful. Everything seems to be running smoothly. Amber is horseback riding two times a week. I really notice her legs strengthening. I wish we could go more....like every day. By the way, I've already checked into getting our own pony, but our city won't allow it. We don't have enough land. Anyway, today we go get her AFOs. I can't wait to see if they make a difference in her stability in standing/walking. Yesterday we saw the pulmonologist. He was a hoot. He kept trying to talk to her, but she couldn't take her eyes off his assistant who is much younger. The doctor even commented that he knew the assistant was better looking, but could she please look at him once in awhile. It was funny. Amber really does seem to have a thing for guys. Anyway, we got to leave the apnea monitor there. YIPPEE!!



We visited with family and stayed at a cottage on a lake over the weekend. Amber went on a jet ski ride with Daddy and he went real fast. She enjoyed it and got very excited.



Amber played in the water with Grandma Bonnie and loved it.



Amber and Great Grandma Eby hung out in the shade right near the water.



Amber and Mariah hanging out together.



Aunt Barb and Uncle Disch were there too. Aunt Barb has been battling ovarian cancer for 6 1/2 years now. Won't you please take a moment to pray for her.



Pam gave Amber, Daddy, Jay, Hayley and Tori a ride in her golf cart.

As always, thanks for checking in on us and signing the guestbook.

Thursday, July 14, 2005 10:42 PM EST

Amber is doing EXCELLENT. I want to call the President and shout it from the rooftops! She is one happy girl! We are having so much fun with her. She seems so alert and appears to be trying to communicate with us. She has been very vocal and it looks like she is actually trying to mouth out words.

The other day I was doing dishes and set Amber next to the dishwasher. I kept commenting how she was helping me do dishes and she was squealing and getting all excited. Then I turn around and she had actually got one of the bowls out of the dishwasher.



She was so proud of herself and so was mama! Of course, I had to run and get the camera!

Today at speech/communication therapy, Amber did excellent again and was very happy. She just turns into a new person while there. She starts breathing heavy and you can tell she is really concentrating. Mom's "homework" for this week is to cut out a bunch of the pictures Cecelia (our therapist) made for us and use them! Every time Amber does something or every chance I get to communicate with her, she wants me to hold the picture up to Amber and have her touch it. It doesn't even have to be on her communication device. Cecelia just wants Amber to get used to the pictures so she knows what picture goes with what. For instance, if I put on socks, she wants me to show her the picture of socks. She even gave us a book with velcro in it so we can keep all the pictures in the book and use them when needed. We are supposed to take this book with us everywhere.

We got a Powerlink on loan for one month. It is so cool. Today I hooked up the can opener to it. Then plugged a switch into it. Amber hit the switch and it made the can opener go. She was able to open a can for me today. She was very proud of herself. I told her she was going to start helping me in the kitchen!

Here are some pictures of Amber swimming.



Here she is with her sister Tori.



She enjoys the kids splashing all around her. She gets very excited.



It is hard for Amber to stay upright in her float. Last year she would always fall forward. Now she is able to lay back. She floats all around the pool that way.


If anyone can give me some pointers, I would like to put some different music on Amber's website. Could any one of our Caringbridge friends help me out here? What website do I go to? The one I go to has a very limited selection of music. Thanks so much!

You know how fun it is with a baby when you can get them to giggle and laugh. That's how I feel with Amber. It is fun to see each day what she can do and what makes her laugh. Oh! Something we have noticed. When her brother or sisters get in trouble (especially Mariah, our 1 1/2 year old) Amber laughs!! She has been doing it more and more often. She laughs when they get in trouble!

Thanks as always for checking in on us. We love you all and your words of encouragement always seem to come at the right time.

Tuesday, July 12, 2005 12:45 PM EST

Amber is doing so great right now. She is so happy and alert. She is such fun to be around. We are no longer using the pump to feed her and she is doing well. She still gets air in her belly, but it doesn't last for long once I vent her. I think the Prevacid for reflux is also helping her quite a bit.

Amber is back on the sleep monitor, just at night. She is supposed to be hooked up at nap times too, but I have been lazy about that. At least we don't have to hook her up 24 hours a day.

Thursday we see the GI Doctor and Friday we see the neurologist.

Amber's preschool teacher has been trying to get together with us for a visit. We finally met up yesterday. I asked if she does this for all her students, thinking this is just the type of thing she would do. She said she missed Amber and she also had something to tell us. I felt my heart drop to the floor. I just knew it wasn't going to be good and it wasn't. Miss Kristen is moving to a different school district. I am SOOOOO disappointed. This is just so sad for us.

No one can really know how great she is if you haven't seen her in action. Her mind never stops working, thinking of ideas on drawing Amber out of her little world and keeping her involved with the entire class. We don't know who our next teacher will be. I will pray it is someone good. I guess we're thankful to have had Miss Kristen for one year. We had no idea how much potential Amber has until Miss Kristen showed us the way. I had a vision for Amber, but never found anyone that shared that vision until we met Miss Kristen. So often we come across people who are burnt out at their jobs and don't have a passion for what they are doing. We know we will always be in contact with Miss Kristen, just not on a daily basis anymore. We hope to work something out where she can still work with Amber tutoring her. I have pondered all the positibilities, even Amber moving school districts, but it just wouldn't work. So we are going to expect alot from our next teacher because we now know what is possible.

During Miss Kristen's visit, Amber was laughing and really enjoying her. Of course, she didn't smile for the camera though.

Friday, July 8, 2005 12:45 AM CDT

Amber is doing really really well. Wednesday night from 5pm on, she cried. She seemed to be in so much pain. I think she had alot of air in her belly, but why?? Since then she has been fine. A friend of mine, who is a nurse, told me it will take months for Amber's body to adjust to receiving her Pedia Sure through the g-tube. That makes me feel so much better. At least that tells me this is all normal what we are going through. I just wish maybe, say a doctor?, might have volunteered that information.


Hayley and Amber posing for a picture.



Amber loves her horseback riding. She couldn't stop smiling when she went yesterday. We are going again on Saturday morning! We were able to squeeze three extra sessions in this month. I believe in it that much.



This is Amber with her new speech therapist, Cecelia. This lady is AWESOME!



Amber came to life when she started working with Cecelia. I couldn't believe the difference in her. She seemed so alert and on the ball. She was able to hit the switch to make different sounds (such as a monkey) that went along with the book. She just LOVED it!

So I hope Amber continues doing ok. She is never consistent with anything and we never know what each day brings. Other than Wednesday night, it really was a great week. I find myself getting a little down when she is crying. It is so heartbreaking to see. When she is happy, it is so wonderful to see Amber smiling and happy and giggling and interacting with us.

The neurologist's office just called and want us to go back to using the apnea monitor because of the apnea episodes they have recorded. Oh dear! I asked if we could just use it at night. I do NOT want to go back to dragging that thing around all day. Breathing abnormalities are SO normal and common with RS. I think Amber's breathing problems, like when she turns blue, is when she has a seizure. I am waiting for a call back to let me know what I have to do. I quit using the monitor when we went camping a couple weeks ago. I see no reason to start back up 24 hours a day now!

Thanks for stopping by! If you didn't see pictures of Amber's first haircut, check it out in the "Journal History".

Wednesday, July 6, 2005 4:53 PM EST

Amber got fitted for her AFOs today. We go back in two weeks to get them. They will support her legs, keep them in the right position and hopefully help her learn to walk.

We are still giving Amber her meals without the pump. It is going well. I think we will continue like this. The GI doctor rescheduled our appointment for next week.

Amber also got her haircut. Tamie, Skylar's (who is Amber's best friend) grandma, cut it. Here are some pictures of her first real haircut!

Monday, July 4, 2005 8:09 AM EST

Amber is doing well. She still seems to be having some problems with her feeds. Sometimes she does ok and sometimes she doesn't. I keep trying different ways and amounts to feed her. Today I am going to try feeding her without the machine. I think this is called a bolus feed. I have already given her a can of Pedia Sure this morning and she seems to be doing fine.

We saw the fireworks at our church on Saturday night and she slept through the whole thing! She woke up maybe one time for about one minute.

This Wednesday we have an appointment with the orthopedic guy for her braces, then a hair appointment. Amber's getting her hair cut! (not too short!) Then on Thursday we see the GI doctor, speech therapy and then horseback riding. It seems like these appointments never end.

I am continuing to put Amber in the walker and she stands so well in it. I just know she is going to walk around once we get the new walker and her feet can actually touch the ground.

Here is an old picture. I am experimenting at finding ways to put more pictures on Amber's website. If this works, I have a bunch more I want to put on that will be easy to view.

Thanks for stopping by! Happy 4th of July!

Friday, July 1, 2005 8:47 PM EST

Yesterday Amber had the nuclear scan. It was very simple and she slept through the whole thing. The results weren't in today, but at the hospital yesterday they said everything looked good (but their not the doctor). The new g-tube didn't come in until today so I took it with me to the doctor for him to put it in. Amber was doing better yesterday and great today. When we got to the doctor's office, she was laughing and flirting as usual. Her tube site looks much better than it did just two days ago. Two days ago it was red and infected looking. Also, it could hardly be moved around. It was very tight to her skin. I think the whole area was swollen and that is why. Since I've never dealt with a g-tube before, I don't know what is ok and what is not. Remember I went to the surgeon last week and he said it was fine and it was red and yucky looking then. Looking back over this week, the only new medication was Prevacid for reflux. Nothing else was changed except I handled her more carefully. So what is going on? The doctor didn't have any answer for me other than her tube site must have been infected. (Even though the doctor at the hospital said it wasn't??) It was very red and yucky looking (and still is a little). The doctor decided not to put a new tube in because it was looking so good. He said she will be ready for the larger one in just 3-6 months. So I don't know why we have been having trouble for weeks and it was real bad earlier this week and now everything is fine. Even Amber's feeds are back to normal @ 150 ccs per hour. We haven't been able to do that for a couple weeks. So I am just going to say this is God answering our prayers. Today we stayed home and only went to the doctor's office and it was WONDERFUL. I even took Amber swimming in the pool and she loved it.

Thanks everyone for seeing how we are doing and praying for us. Why is it that we are always so amazed or don't want to give God the credit when our prayers are answered. There's no other explanation this time.

Wednesday, June 29, 2005 7:55 PM EST

Today was not a good day. Amber woke up crying. Most of the day she was either sleeping or crying. I took her to the doctor this morning and they could find nothing wrong. Then I had to take Jay to his allergist appointment. We almost got there and then I realized he forgot some things he had to take with him. It was clear across town and we were almost there, so I had to turn around and go back home, then go back out there. While there, Amber started crying hard. I took her out to the van. I started getting really stressed thinking what the heck are we supposed to do now. So we left there and headed home. We got on the expressway and Jay says "Mom, we're in Michigan." I had gone the wrong way. The worst part of it is I didn't realize it! I just started crying then. When we got home I decided to touch every part of her body and try to figure out what was hurting her. It's not like I haven't done this before, but I was determined to figure this out. I thought it was the g-tube and that's why we went to the surgeon last week. But noooooooo, he says it was fine. So then I figure it must be her hip/leg area because she appeared to be hurting when I would pick her up and hold her. Anyway, when I pushed around her g-tube area, she really fussed. So I called the surgeon and they got us an appointment on Friday. I hung up and thought what am I doing. We can't wait until Friday. Is anyone taking me seriously? So I called back and got really aggressive. I told the nurse I don't care what the doctor says, I am saying there is a problem and we need to take care of it now. So she called the doctor on call who was in surgery and he said he would meet us at Toledo Hospital. We went to the children's floor and he examined her in a room up there. He said we could be admitted and get the tests done. I said I didn't want to do that if at all possible. So tomorrow we are getting a nuclear exam. They will insert dye into the g-tube site and see where it goes and see if it is emptying out. Also, we are getting a new g-tube button that is larger. I will put that in tomorrow. Then we will see the surgeon on Friday to go over the test results and look at the new button. They also suggested she take Reglan, but I said no to that. (I think it helps empty out the stomach) I have heard too many bad things about it, such as causing neurological problems and seizures. We don't need that! I told him I would do it as a last resort, but let's see what happens with the other things we are trying. Why would we put her on another drug when we don't even know if that's the problem?! I know alot of girls with RS take it, but I just don't think it sounds good.

In between all this craziness, I actually got the whole physical therapy/insurance thing figured out. I spoke with a woman who knew her stuff. I will definitely keep her #. Amber is allowed 30 visits every 12 months. So if we go today for PT, we have to count back 12 months and make sure she hasn't gone over 30 visits. So we have to take a break for awhile until I figure this all out. I have a list of dates we went to therapy for the last year. I just haven't had time to go over it today!

Thanks so much for listening. Writing this journal is very therapeutic for me. Also, it is very helpful when I am able to look back and see when she started having problems. This way I have it all documented.

This has been such a draining day. I am anxious to get the new tube in. The skin around this one looks so irritated and messed up. A friend gave me some Tylenol with codeine and I have been giving it to her today. So glad I have it. It really knocks Amber out. I am a little bit down today. I am sick of fighting for Amber and no one listening to me. Every time this happens it seems like I say never again, and then it happens again. We have to allow Amber to go through alot and then someone finally takes action.

Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, "This is the way; walk in it."

Isaiah 30:21

Tuesday, June 28, 2005 9:52 PM EST

Hi Everyone! Amber is still not ok. She seems to not be able to tolerate her feedings! I have lowered the rate it goes in to 50 ccs per hour. It used to be at 150 ccs per hour. She seems to have lots of air in her belly and I have to vent her alot. This is so frustrating trying to figure out what is wrong. Imagine how Amber feels. She knows what is wrong. Sometimes we look into each others eyes when she is crying and I know she is just trying so hard to tell me. I took her to the surgeon on Thursday and he says the g-tube is fine. I have since started her back on Prevacid just in case she is having reflux again. The fundo surgery definitely helped, but it is still possible she is having reflux again. Without the surgery, even medication didn't work. I called the GI doctor and we are going in next week. I told him what I was doing and he agreed. Funny that I make the decisions. I just let him know what's going on. Amber can be happy sometimes and sometimes not, so this isn't a constant thing. We went camping over the weekend and by Sunday I was just giving her water. She seemed so irritated by the Pedia Sure. It was so hot and I wanted her to at least have some liquid. She had fun and was generally happy unless I started feeding her. She has lost two of the five pounds she had previously gained. She seems to tolerate her feeds during the night, so that is a good thing. I spend so much time trying to figure out what I am missing and what I can do to make things better. Guess guess guess!

On Thursday I also took Amber to see a new speech therapist. She was awesome. She is definitely a keeper. The woman has been doing augmentative communication for over 20 years and has big ideas like Amber's teacher. Those are the kind of people that get me excited to try new things. She is really going to get us moving with the communication board. While there, she had Amber press a purple button. Every time she did, a toy Barney would sing and dance. Amber LOVED it. It was so exciting to see her get so excited and we were clapping for her and cheering her on. The therapist works for Toledo Public Schools during the school year and then four nights a week where we go for therapy. Wow! I told her she sounds about as busy as me. She said "Busy people get things done, don't they?!" I love that. It is so true.

I still don't have the whole physical therapy/insurance thing worked out. I spent alot of time on the phone again today. I am documenting everything. I have a form I fill out every time I make a phone call for Amber. This helps me keep track of things. I am TRYING to get organized. I am now being told I have to request a state hearing to find out if we have gone over our sessions. Totally crazy. I know there has to be an easier way. Can't someone just look up on a stupid computer and tell me if we have met our quota?! Every person I talk to tells me something different. I am now waiting for a call from someone who is local and I hope can help me. This is all so very simple and I think many of the people I call aren't as knowledgeable as me when it comes to what is going on and what our rights are. In the meantime, no physical therapy until we work this out. I refuse to take a chance of racking up an outrageous bill for this. We are doing our own therapy at home for now.

The doctor let us unhook the apnea monitor for the weekend and I haven't heard from him so I'm not hooking it back up. We have an appt. to see him next Friday. This is our neurologist, and after him we will see the pulmonologist. Personally, I think this is all a waste of time, but I know I have to go through the motions just in case.

Thank you for signing the guestbook. I am always pleasantly surprised when someone signs it that we didn't know was or is still reading our journal.

Tuesday, June 21, 2005 6:01 PM EST

Amber hasn't been herself for a few days. She is happy sometimes, but seems to be real bothered when I move her. If I had to guess (isn't that all I do) I would say she has something going on with her g-tube. So I made an appt. with the surgeon on Thursday.

This is such a busy week for us. Amber has four appointments/therapies on Thursday! And tomorrow she and the other kids go to the dentist. The dentist is in Bowling Green and specializes in handicap patients. I really like him.

I am hoping the apnea monitor is over with soon. It went off Saturday at 4am and wouldn't stop. I forgot to charge the battery and this is what happens. It is supposed to stop once I plug the charger in, but didn't. I had to unscrew the back and disconnect the battery. It was very unnerving. Kindof like the smoke alarm going off and scaring the crap out of ya. This was after it was going off at least once every hour. If I had been thinking clearly (but who is when you're half asleep) I would have realized it kept going off because it needed charged. The next day I had a meltdown and told the monitor place I was done and refused to use the stupid machine again for my sanity and those around me. I said I am sick of beeping, I am sick of remembering to charge batteries and I'm sick of cords hanging off my kid. I know the woman thought I was nuts to take a chance on my kid not breathing and not having the machine, but people just don't understand this is the way it is always going to be. I don't expect to find out anything from this whole apnea monitor ordeal. I suspect they are going to tell me she has irregular breathing and holds her breath. I have since come to my senses and plugged her back in on Monday. If we go somewhere, I unplug it now so we don't have to carry it around. Saturday it will be one month so I will call the doctor hopefully tomorrow and try to get the ok to discontinue it. We are going tent camping this weekend. Can you see the monitor going off during the night there?!! That would be my luck.

I have been on the phone a ridiculous amount this week and especially today. I have had to stop Amber's physical therapy because insurance claims we are over our limit for the year. We have only actually gone to nine visits this year! You might remember I stopped for awhile since Amber was getting it at school. When I call insurance, they claim we are not overlimit. The therapist received a letter stating we are three visits over limit. I could scream! I, of course, can't continue the therapy until I get this straightened out. It is so frustrating!

On Thursday we are trying a different speech/communication therapist. Scheduling didn't work out with the old one.

I have been putting Amber in her walker. Today she actually was able to move backwards in it. And this is her only being able to touch the floor with her toes! I just know once we get the right sized walker (or she grows into this one, whichever comes first) she will be able to get around.

Oh and one more thing. Remember I tried prune juice. Well, it didn't work and Amber hasn't been the same since. It is taking her awhile to get regular. No more messin with her constipation medicines. They really do work and I guess I don't need to mess with a good thing!

Thanks for listening. I know this was a long one. Please do sign the guestbook again.

Friday, June 17, 2005 10:36 PM EST

Yesterday we saw the physical medicine doctor. We will now go see an orthotics specialist to fit Amber for braces for her legs. I hope this will help her walk. The ones she has now are so uncomfortable and HARD that I don't even put them on her. These next ones will be more flexible.

I am going to check into another speech and physical therapy place. Not because I am unhappy with where we are at, but scheduling has become a real problem and I always like to see what's out there. Never know what we might be missing.

Today I went to a Technology Class on communication devices. It was great. I was the only parent there! Everyone else was a "professional", such as teachers or therapists. When they heard I was from Northwood and had THE Miss Kristen for Amber's teacher, well, I heard all the wonderful things about how great Miss Kristen is. Lynn, one of the presenters, even said Miss Kristen could teach the class today! Anyway, I came away with my head spinning. There are so many devices we can use to help Amber lead such a fulfilling life and be able to participate in just about everything we do. They talked about how in some classes, the handicap child is on the sidelines, is happy, but not actually an active participant. Not so with Amber and that's because of the teacher we have. She is definitely a participant. They also talked about how we underestimate what these kids can do and we need to push them to be more independent. I plan on getting alot of these devices and hope insurance will pay for them because they are expensive. Everything we saw today was under $500. That is considered cheap in the handicap world. I actually can get alot of them on loan so that is what I will do for now. We got to actually use alot of the devices. Oh I could go on and on about what I learned. One thing I was amazed to hear is that a child should be hitting switches (the buttons that make things go) or communication devices at least 200 times a day. WOW! That's going to be hard to do. That means Amber should be communicating and using them at all times. I have a whole folder of paperwork and websites and ideas to go over. It is all so overwhelming, but definitely something I will pursue. Amber could even help the kids do chores. For instance, we could hook a switch into a device and then hook the vacuum cleaner to the device. Amber could have control of turning the vacuum cleaner on and off just by hitting a switch. She would just love that. Can't wait to try it! Or she could play the game "Trouble" by hitting a switch that would spin a device to point to dice instead of hitting the "popper" on the trouble game. (Hitting the "popper" would be too hard for her.) Then someone could move for her. That's just a few ideas I have.

Hope this all makes sense. I realize it might be hard to follow what I am saying when you haven't actually seen what I am talking about.

Amber is still doing well and gaining weight. I have actually slowed down on the Pedia Sure a little. She is up to 35 1/2 pounds!

Tuesday, June 14, 2005 2:12 PM EST

Yesterday I went to the apnea monitor place and learned CPR. It was very informative and I hope I never have to do it. Also, they told me they have the results from the first download on the apnea monitor and Amber had 11 incidences. They said one was 45 seconds long. I will get more information about all this when I see the pulmonologist in July. I really don't feel this is some major newsflash. I already expect Amber to have problems with her breathing. Girls with RS DO have irregular breathing. The apnea monitor is such a pain to carry around. Can't wait to be rid of it.

We see the doctor for her legs on Thursday. Her one leg looks so deformed when she stands. It looks worse and worse.

That's all! Thanks for checking in.

Saturday, June 11, 2005 7:53 PM EST

I added some new photos under "View Photos" of Amber in her walker. Amber is still doing well! Thanks for checking in!

Thursday, June 9, 2005 1:53 PM EST

Amber is still doing well. Yesterday she had a crying spell that lasted for about a 1/2 hour. She appeared to be in major pain. We were in the car and she just started crying hard. I think she had to poop, so I broke down and gave her some constipation medication yesterday, which I have withheld for about a week. Jay had to vent her. (11 years old) This was his first time and I know he was nervous. It was so hot out that I didn't want to stop, but wanted to get home where it was cool. He really took charge and didn't even hesitate. I felt bad for Jay having to do that, but know it will just make him a better person because of it. I gave him a big hug for that one!

Other than that, Amber is extremely happy and is continuing to gain weight. She is up to 33 pounds and looks very healthy. I have also started feeding her by mouth a little more and she is doing well with that.

Her levels came back on her seizure medication. It is supposed to be between 10 and 35. Her level came back at 52!!!!! Thankfully we are not going to alter anything, but keep on giving her the same amount. She seems to be tolerating it well. I just have to watch that she is not sleeping too much or appears to be drugged, then we will definitely have to cut back.

I was able to get hold of a Bronco Gait Trainer (it's a walker) from a company called Equipped Kids. They provide free loaner equipment. I love it. It is a little too big for Amber, but at least I know what we want now. I have been trying different things out. I will try to get a picture of her in it and post it on the website.

Thanks for signing the guestbook. I love it when I see more and more people that have heard about Amber's website and are checking in on us.

"The only real mistake is the one from which we learn nothing." ~~ John Powell (1834 - 1902)

Friday, June 3, 2005 9:05 PM EST

Amber is doing great! I'm almost afraid to say it out loud. I think the seizures are gone as of yesterday. They left just as suddenly as they came! I can't remember the last time Amber cried. She is THAT happy. What more could you ask for from a 3 1/2 year old. Her belly is full and no more painful acid reflux. The surgeries have been a success. Now why didn't we do it sooner. It's only been 1 month and 6 days since it was done, but who's counting. Also, Amber weighs more now than she ever has. She gained her weight back that quickly, and then some.

Today I tried out her communication board. I got a tray for it to sit on while she is sitting on the couch. I gave her the pictures cow and dog. I recorded "Dog-Ruff Ruff" and "Cow. Mooooo." She loves it. I just let her play with it, hitting the buttons. Hayley and Tori want to record everything for her so it's their voices. They said Amber would like that better than my voice. OK!

I came across this poem and thought it was neat.

To Each His Own

I cannot change the way I am,
I never really try,
God made me different and unique,
I never ask him why.

If I appear peculiar,
There's nothing I can do,
You must accept me as I am,
As I've accepted you.

God made a casting of each life,
Then threw the old away,
Each child is different from the rest,
Unlike as night from day.

So often we will criticize,
The things that others do,
But, do you know, they do not think,
The same as me and you.

So God in all his wisdom,
Who knows us all by name,
He didn't want us to be bored,
That's why we're not the same

~Author Unknown~

Wednesday, June 1, 2005 8:17 AM EST

Amber is doing well. She is still having seizures. Her apnea monitor has become somewhat of a comfort. I don't have to keep checking on her quite as much to see if she is breathing! It doesn't go off alot. When it does, there is usually something going on. Many times when it goes off, I catch the end of her seizure. The doctor has raised her medication again. So she is getting 100 mgs more per day than she was getting a couple weeks ago. The seizures do seem to be getting more intense and they seem to happen more when she is tired, especially at night when she is falling asleep. I am so happy they aren't so bad we have to go to the hospital.

Three days ago I stopped giving her her constipation medicines. I decided to try prune juice. So far it is working great. How easy is that! So now Amber is on one medication! That's a record.

Amber will start up with physical therapy weekly now that it is summer time and we are more available. She will go to Prescribed Pediatric Center, her special day care, four days a week from about 9-5. She LOVES it there and I love the break.

Please sign the guestbook if you are still checking in on us!

Saturday, May 28, 2005 9:43 PM EST

We got the apnea monitor today. It will set off an alarm if she stops breathing for over 25 seconds. When it goes off, it is then recorded in the monitor's memory so it can be looked at by the doctor. It measures the movement of her chest. It has started going off tonight a couple times. We have noticed her NOT breathing a few times, but it doesn't go off since she starts breathing before 25 seconds are up. Other times it goes off and we see her breathing. I hope this doesn't go off all night! It will be interesting to see what happens with her breathing in the next couple weeks. The wires, along with the g-tube, sure make it difficult to move her around.

She has been happy and seems to be her usual self. She does seem to be having a couple seizures a day, but they aren't anything major.

When we went to her class picnic on Wednesday, her teacher, Miss Kristen, gave us a binder of her work and pictures and stuff. I just got a chance to really look at it today. Wow! It was so special. I didn't realize how much her friend Alex really took to her, even though I have been told numerous times. There are pictures of him and Amber together. You can just see how much he cares about her. What is really great is his grandparents live right next door to us! So that means Amber will most definitely get to see him over the summer a few times. I put a few pictures of them together on the website.

I was able to print out a bunch of words and pictures for Amber's communication board today. Finally! I can't wait to really start using them. So I will get together with you this week Miss Kristen to have them laminated! Thanks!

Thanks again everyone for checking in on us. Check out the new photos on our website!

Friday, May 27, 2005 3:36 PM EST

Amber has been doing ok the last couple days. She is happy most of the time. She isn't doing any crying, but not always herself. I think she had a couple seizures yesterday, but their not bad. We have raised her medication levels and now the neurologist wants us to go back and see the pulmonologist and get her on an apnea monitor. Well, we can't get into the pulmonologist until July so we are getting the monitor now and then will see the pulmonologist in July. What a drag. He wants her hooked up to it 24 hours a day for one month!! This seems crazy, but then I know girls with RS have been known to die suddenly of unknown causes. Sometimes I think doctors here aren't quite sure what to do and yet I know they have to be thorough. Soooooo I should probably call the doctor in Texas to see what he says. I know not breathing during seizures and just plain breath holding is all normal for Amber, but she really did it way too long on Wednesday. I try to think back to what happened. Did she pass out? But if she had passed out, wouldn't her color have come back? If she did pass out, that doesn't necessarily mean she automatically starts breathing again either. It wasn't like she was holding her breath on purpose. So we will be contacted by someone today and we are supposed to get the monitor tomorrow.

Tomorrow we are going to get her levels checked. This means we are going to see how much of her seizure medicine is in her and if they need to adjust it. Can you believe they didn't run that test at the hospital?? I just assumed when they drew her blood that THAT was the test they took. I ask so many questions when they are doing things, but I guess I didn't ask enough. Also, at my request, our doctor ordered an EKG for "long QT". This is a breathing abnormality found in girls with RS and should be tested once every 1-3 years. I really don't know anything more about it. So far she doesn't have it.

Thanks again for taking an interest in us and signing the guestbook. If you haven't signed it in awhile, please do so!

Last night Amber coughed alot. Now what's up with that? Every time I went in to check on her, she was wide awake just looking around.

I guess that's all for now.

Thursday, May 26, 2005 7:30 AM EST

I guess Amber felt we needed some excitement in our lives again. We couldn't go for a week without something happening. For the last couple days Amber hasn't been herself. She's been breathing heavy, sticking her tongue up over her upper lip alot, holding her breath, staring off to the upper left. I questioned if she was having seizures. They noticed it at school too. Yesterday about 4:30 she was sitting on the couch hooked up to her feeding tube. I came out to check on her and she was PURPLE. I started shaking her, picking her up, putting her back down and I just started flipping out. She wasn't responding. She was looking to the upper left again and I figured she was having a seizure, but I couldn't get her to breathe. I called 911. She started coughing and breathing during the call. They sent paramedics out anyway. It was crazy. It really scared me and the kids. Later, Hayley (9 year old) says "Mom, when you tell people she turns purple, I didn't know you meant THAT purple". That gives you an idea how bad it was. I refused to go to the hospital by ambulance and had to sign a paper. Everyone was ok with that. We had police, EMS and paramedics here at the same time. It was quite a sight. I got to hand out some pamphlets on Rett Syndrome and they said they would hang it up at the station.

At 5:30 we went to Amber's school picnic. Amber was asleep, waking up periodically, but totally out of it. I knew I should probably get to the hospital, but I DIDN'T WANT TO GO! If I had my way, I wouldn't have gone, but more than anything else, I was afraid of what doctors and other people would think. I know it may be hard for anyone to understand my way of thinking, but I know this is something we just need to get through and it's certainly not going to be the only time this is going to happen. I don't want to always be running to the hospital every time. After talking to our neurologist, we went to the hospital about 7:30. They ran tests to make sure there were no infections going on. At about 11pm I prayed for the first time during all this. Crazy that I hadn't taken the time to pray at some point. I apologized to God for leaving him out of all this and begged him to please let us go home. I had just heard in my Bible study that we need to be more specific with our prayers, that God wants that. So I prayed that I be able to sleep in my own bed and lay my head on my own pillow. Amber's breathing, with a little bit of snoring, was kindof comforting and I started nodding off. All of a sudden I realized the noise had stopped and I looked up to see her having a seizure and her lips were turning purple. So I decided God wasn't going to answer this prayer and I would have to stay. We most definitely never get to go home when she is still having seizures. I was wrong! About five minutes later they said our doctor said we could go home if I was comfortable with that and he wanted to see us in his office the next day. Yippee! I can't tell you the relief I felt. I cried the whole way home. They were tears of joy. I so wanted to be home in my own bed and not spending the weekend at the hospital. I still can't believe we were able to go home, and right after her having a seizure!! Now that was a prayer answered!

So Amber has had seizures off and on since we have been home. She doesn't breathe during these. We kept her in our room, so I didn't get much sleep last night. Today we are supposed to get her Mic Kee (spelling?) button in, in addition to seeing the neurologist. We are giving her more of her meds now and hope this will do the trick.

So thanks for listening. I so appreciate all of you. Some of you tell me you read the website, some of you sign the guestbook. It gives me such strength. You can't know how helpful it is to know that people are just taking an interest in what is going on and caring. Even the people I have met through the Internet and on other caringbridge websites. Everyone is so great!

One other thing. Amber got her ears pierced on Sunday. She didn't cry. I'm not surprised. She's been through worse things than that. She looks even prettier with her cute earrings.

Today I will have to talk to the kids about all this. We haven't had a chance to talk. They saw alot and I know it was scary for them. They appear to handle things so well, but I wonder sometimes when their not saying anything what is really going on in their heads and how it is affecting them.

Thursday, May 19, 2005 9:58 PM EST

Amber is doing great! She is happy, she has gained her weight back, she is alert. Amazing what a full belly does for her.

We got a communication board a few weeks ago. I finally sat down and learned about it. (Kindof like learning how to program the vcr. Know what I mean?) The board has 12 different levels that we are able to record 8 different things. So Level 1 might be food items, level 2 colors, level 3 numbers, etc. Right now we have 8 different colors and record the names of those colors. When she hits red, it says "red". To start, I blocked off 6 of her choices so she only has 2 choices. I gave her red and purple and then she has to tap the button in answer to my question. For instance, I tell her "Amber hit the purple button." When she does it right (which she almost always does) we clap and get all excited for her. She looks at us like we're nuts, then starts laughing because she realizes we are responding to what she has done. This is so much fun seeing what she knows. I plan on having buttons for "I'm thirsty" "My tummy hurts" "yes" "no" and much more. I just know Amber is really going to communicate with us. She just needs to realize she is going to have some control over her life now and this board is the key to everything. By us making a big deal every time she hits the right button, she will get the hang of it. I am so excited. It will be so much fun to see what she knows. I finally updated some more pictures and you can see what her board looks like. Hopefully my explanation of it made sense. Amber's teacher and everyone at school have really been helpful in getting us going with this.

Amber's last day of school is next Wednesday. I am kindof sad that we just got this board going and now we have to wait until school starts again to really start using it. Oh well. We will use it at home and then she can show off what she has learned over the summer when she heads back to school. Amber will have her same teacher and same aide next year. Yippee!! School has been much much much better than we could have ever imagined for her. We want Miss Kristen to be our teacher forever!

Thanks for checking in. Glad I have some good news to tell.

Monday, May 16, 2005 7:18 AM EST

Amber is doing well. No crisis to report! Yeah! The g-tube is working great. Amber's cough is getting much better. I have started giving her food and a little juice.

Last week I got a stander for her. It is a loaner. When trying to put her in it, I noticed her right leg wouldn't go straight. After examining it, I notice there is a curve. She doesn't stand straight and I think her leg has grown wrong. Kindof like someone who is bow-legged. It really is strange looking when you look at her legs side by side. Soooooo I have a call in to a doctor (I think she is physical medicine). I heard about her from another mother. And we will take it from there. She has AFO's she is supposed to wear, but I feel they are too tight and small.

That's about it! Here's hoping our life is getting back to some kind of normalcy finally. What is normal anyway?

P.S. I never did get around to adding new pictures. I'll get to it some day.

Wednesday, May 11, 2005 8:19 AM EST

Hi Everyone! Amber is doing much better. The hospital called yesterday and the results from her tests show her abcess is a different type of infection than they thought and they changed her antibiotics. They really didn't give me much more information, even though I asked.

We see the surgeon tomorrow. Her cough is getting MUCH better. I am ready to start feeding her some food. I gave her a grape yesterday. I am anxious for her to get back to horseback riding. She is very floppy.

I got some pictures developed of when Amber was in the hospital for tests before her surgery. I will try to post them today.

Nothing else going on and that is good news!

Sunday, May 8, 2005 10:35 PM EST

Amber was crying lots today. We went to church, then decided to go to the ER. All of a sudden I realized we had let this go on long enough. I was so sure she needed to poop. They took x-rays of her stomach and bowels. Everything looks good. She has one of those pimples on her butt again. It was infected. Official Diagnosis: Buttock Abcess and Diaper Dermatitis. It was such an exhausting afternoon and I spent most of Mother's Day crying. They told us she was going to be admitted, so I went home to pack. Once I got home, Karl (daddy) called me and said they decided she could go home. I was soooo happy to hear that.

So all this time Amber has been upset and having lots of air in her tummy because of this stupid abcess causing her so much pain. She was crying lots, which meant she was swallowing air alot and needed to be vented. We can already see a difference in her tonight after being on antibiotics. She goes through so much and knows what is wrong with her and we just keep moving her around, sitting her up, holding her, even taking her horseback riding, when her poor butt hurt real bad. She is so tough. I swear Amber seems so mature to me. She takes so much from us and bounces right back as soon as we take care of the problem. She would look deep into my eyes and just whimper. I would ask her what is wrong. How awful for her to not be able to tell me. I told her I will never let her be in pain for that long again. We need to take care of things much sooner when she starts crying. I feel so bad that she had to go through all that.

I am glad this day is over. Now I am hoping life will finally get back to normal because I think the g-tube and fundo has been and will be fine now that we have finally figured out her latest problem.

Thanks for listening.

Saturday, May 7, 2005 9:50 PM EST

Today was the pits. Amber cried most of the day. I don't think she has smiled in two days. She is definitely in major pain. I think it is a combination of air in her stomach and constipation. I called the surgeon tonight and he gave me ideas to help her. He said when I feel it is time and I can't take it anymore, bring her to the hospital. I asked him if all this air is normal and he said there is no normal and that every kid is different. He said it will take awhile for her body to adjust. We are going to slow down on the Pedia Sure and give her one can less a day for now. So I loaded her up with every medication I could, ibuprofen, gas drops, suppository, etc. She has been sleeping for a little while, so I am hoping she will sleep tonight. I know she is exhausted from all the pain and crying.

This reminds me of when the seizures were going on. We kept wondering if we were ever going to get things under control and we had to be patient. So I am trying to be patient now and hope her body gets used to everything soon!

Thursday, May 5, 2005 10:53 PM EST

Amber had a rough day today. Sometimes she was ok and then she would snap. It got especially bad this evening when we took the kids out for ice cream. She sure knows how to time things. I was able to "vent" her tube, which helped a little. She cried and cried. Her stomach was actually gurgling. She had so much air coming out. When I vent her tube, I open it up, then stick a large syringe on it, then if she has air, it will "backwash" into the syringe and actually gurgle. If she doesn't have air in her stomach, when I open the tube, nothing happens. Sorry to get so graphic, but I figure you are wondering how we get the air out. She is sleeping peacefully now. I was told it will be like this for awhile, but today seemed to be especially bad. She is unable to burp or throw up, so her body is adjusting to everything. We tried horseback riding, but she only lasted about 15 minutes. Hopefully tomorrow will be a better day for her.

Amber's cough seems to be getting a little better. She still is not eating anything by mouth, but we did sneak a few bites of ice cream to her tonight.

I am definitely getting used to the tube. She didn't get quite as much formula as she should have today. It just didn't seem right to keep putting it in her when she was having so much trouble. I am making up for it tonight. It is wonderful that she is able to be fed while she is sleeping. She seems to sleep well at night, so the feedings don't bother her and we can get alot of nutrition in her.

Monday, May 2, 2005 4:45 PM EST

WE'RE HOME! What a long five days. I never left the hospital. Amber was so funny riding home. She was looking all over.

Amber is on Tylenol and Motrin. She is doing well, but definitely not herself. She goes from very happy to crying real hard. Her stomach gurgles alot and I "vent" her tube. Kindof like burping her. It definitely seems to help. Can't wait to give her a bath. We both need one.

Well, I better get going. Lots to do around here and can you believe I'm on the computer! Just wanted to update all our faithful followers!

Sunday, May 1, 2005 11:06 AM EST

We're in for another day. Amber had a rough night. She cried quite a bit and was up from 4am-7am. She seemed to be in so much pain. She kept saying Ma Ma over and over. That was pretty cool, but then I knew she must be in alot of pain to be saying that. She even had a fever of 100. Also, she did her therapeutic listening again on Tuesday so does that have something to do with her babbling? It always seems like when she talks a little, it is the week of doing her listening therapy. Finally she pooped and she is fine now. So we are going to increase her feeds today and I think we should be able to go home tomorrow. I'm counting on it!

I stayed up until 1am last night watching tv and doing some of my crafts I brought. Probably wasn't a good idea, but once I get started on something, I have trouble stopping. Caffeine is a good thing! I am feeling better today (mentally).

Amber seems to be taking her Pedia Sure well. We give her bolus feeds. This means we put it straight in the tube and it takes a few minutes to go down. We have not used any type of machine yet. I will probably learn how to use that once we get home. Someone will bring a machine to our house and show us how. Then we may use it at night only. My goal is to do the bolus feeds as needed, and keep trying to feed her by mouth and skip the whole night feedings by machine that we are supposed to do when we get home. We're just taking it slowly to see what she tolerates. She is not being fed by mouth at all yet. She had a bottle the first couple days, but we have stopped that. I want the cough to go away first. That way we will know the cough is not due to aspirating on her food. Hope that makes sense. She definitely seems to be very happy and alert during and after her feedings. The nurse told me older kids tell her they can actually taste the liquid going in their g-tube and request chocolate. Interesting!

Thanks for checking in on us. So glad I am able to use a computer here to update. I am looking forward to watching a movie tonight with Rosie O'Donnell about a handicap person. I think it is called My Sister Rides The Bus or something like that.

Ta ta for now.

Saturday, April 30, 2005 12:06 PM EST

We're still at the hospital. The doctor (not the one who did the surgery, but a partner) says we won't be going home today or tomorrow! I hope he changes his mind. Amber got her first feed through the tube today. It was just a little bit of Pedia Lite to see how she handles it. I am anxious for her to get something in her stomach. She is still doing well. She cries every time she coughs. I am anxious for the cough to go away. No more morphine, only Tylenol. They say it makes her constipated and I know that is going to be a big problem for us anyway. Amber has gone without her constipation medicine for 3 days now and they are going to introduce it to her slowly. I'm sure she will have an awful time going by tomorrow. Each day at the hospital is getting harder. It's boring, I'm tired and it's boring. Did I mention it's boring? I brought some of my stamps and paper and made cards, I'm almost done with all my reading I brought. We are staying here for awhile to make sure Amber's body responds well to the feedings and we have to do it slowly. Also, I think she has to poop before we are allowed to go home. Somehow I knew when the doc said 2-3 days, (the doc that did the surgery) it just wasn't going to work out that way. I'll have to give him a hard time about that when I see him. Daddy hasn't been able to even come up yet. He works every day, then Jay has a baseball game every night. He should be able to come up tomorrow.

Thanks for signing the guestbook everyone. It teared me up. I feel like I've been away from home forever and reading the guestbook was a real treat!

Friday, April 29, 2005 10:54 AM EST

Hi Everyone! I was able to locate a computer at the hospital. Yeah! Amber is doing great. We got to the hospital at 7am yesterday. Surgery started about 9:30. They were running late. They even let me "suit up" and go into the surgery room with her and hold her hand as she went under. I have to admit it was a little scary going in there and seeing all the doctors and nurses and equipment, but I'm glad I did. My heart was racing like crazy though. They put tape over her eyes once she was asleep because she didn't close her eyes on her own and they said her eyes would dry out otherwise. I thought that was interesting that she didn't close her eyes on her own. The surgery was about two hours and everything went well. Grandma Bonnie came up and sat with me for a couple hours.

Amber has these teeny tiny incisions in her belly from the surgery. I haven't seen what they look like yet, but the gauze is about 1" x 1" for each. There are 3 of them, and then the little hole where the g-tube is. Wow! I still can't believe what the doctors are able to do. The g-tube is pretty funky looking and I'm trying to get used to it. She will get a Mickey Button (Mic Kee?) in about six weeks at the doctor's office. I know I didn't spell it right, but that's how you pronounce it. Think Mickey Mouse! So for now she has a thin tube coming out that we will probably tape to her stomach when she's not being fed. I gave her a little apple juice yesterday in a bottle.

Amber smiled for the first time today. She is getting lots of morphine and also tylenol. I am able to request morphine every hour. If she makes the slightest peep, I ask for it. I took her for a wagon ride down the halls today and got a smile out of her. We didn't sleep well last night. She is still coughing and crys each time. But no more throwing up! I have learned to push in with a pillow on her stomach to help the pain when she coughs. Think about how it feels if you have ever had surgery and then have to cough! Amber's face is kindof puffy. They tell me that is because of the fluids going into her and from the surgery. She will start her tube feedings tomorrow.

So everything is going better than I expected. The important part is Amber isn't crying continuously like I thought might happen. The drugs help and I just think she is a tough cookie. There is no unnecessary crying going on. She seems so mature to me. She whimpers a little and I get her some morphine. Simple! I often lay on the bed with her and she just looks into my eyes. It is so precious.

Karl (Daddy) got the other kids to my friend Tina's house yesterday. They had a blast. Tori threw up in the backseat of the car on the way home. Grandma Heiss is watching the kids today at our house. Hopefully no one else will get sick.

So thanks as always for checking in on us. And thanks for signing the guest book. More and more people are reading our website and signing the guestbook. Too cool! I really appreciate all of you!

Tami

Wednesday, April 27, 2005 10:27 PM EST

Hi Everyone! Well tomorrow is the big day. I really haven't let myself think about the whole procedure that Amber will be going through.....until tonight. I'm a little sad. I wasn't even going to write something and then thought I probably should. Today I told Amber a little about what she will be going through tomorrow and that she will have a g-tube just like her friend, Skylar. She smiled and just gave me one of her "looks" when she kindof looks out of the corner of her eyes. Just makes me wonder how much she understands. I know I will be quite emotional tomorrow when they take her away. That will be the worst part. Then I plan on having some good Beaners coffee and probably pig out on a big breakfast. I'm usually not a breakfast person, but I know I will make an exception tomorrow. What do we call that....emotional eating? ha ha

Will keep you all posted as soon as I can. I will have to ask around at the hospital and see if they have a computer. We are supposed to be in for 2-3 days if all goes well. Thanks so much for signing the guestbook. It is so cool to see the people that are reading about Amber. Isn't the internet wonderful? You get to take a little peek into our life whenever you want.

Do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

Isaiah 41:10

Thursday, April 21, 2005 10:09 PM EST

Things are moving rather quickly now. We did the Upper GI on Wednesday. Yesterday I spoke with the GI doctor from Texas. She also recommends the fundo and g-tube. We originally had an appt. on 5/2 to see the surgeon. Yesterday afternoon I realized we couldn't wait that long. Amber's cough and throwing up has gone on long enough. So I called the surgeon and we got in today. It was a nice appointment. (No kids again! Except for Amber, of course.) He talked with us for about 45 minutes. He explained the fundoplication and g-tube. In a nutshell, he will take her stomach and wrap it around her esophagus. When she eats (orally or by g-tube) her stomach will get full and will tighten around her esophagus, which will close the opening so she won't reflux. We will still attempt to feed Amber, but the g-tube is necessary for now. It can be taken out at any time if she ever does well enough on her own. The fundoplication will stay that way for life. There will be three incisions for the surgery, so she won't actually be opened up. I am totally amazed at what these doctors can do. She will be put to sleep by gas and then she will get an IV. I made sure to ask about that. The procedures will take about 1 1/2 hours and we should be in the hospital 2-3 days if all goes well.

So she gets this all done next Thursday, April 28. The surgeon is from Detroit Children's Hospital. He comes to Toledo one day a week and Thursday is our lucky day. I try not to let my mind think about it all. It's been a sort of topsy turvy day thinking about all this. I'm kindof sad about it, but I know it is the right thing to do. The thought of what they are actually going to do to Amber is beyond my comprehension. And then the whole g-tube scares me and it sounds gross. I have seen one before, but to actually be the person to clean it and everything is scary. I know everything will be fine and in a couple weeks I'll probably be writing this is the best thing we've ever done and I shouldn't have waited so long.

Thanks for stopping by!

Monday, April 18, 2005 1:06 AM EST

Hi everyone! We saw the pulmonologist today. This is the same man that put Amber through "the torture chamber" last week. He is very nice. He told me she did well and he was glad I didn't opt for an IV to help do the procedure as she had been poked 12 times the day before for her PH probe and EGD! WHAT! I told him I didn't need to hear that one. He said he wasn't there, but that's what he heard. Mental note: Be with Amber whenever she gets an IV put in. Anyway, he recommends the fundoplication and G-tube, just like the GI doctor recommends. We talked for about 1/2 hour. He doesn't know for sure if Amber is aspirating from food going in or from food/acid coming up from her stomach, but it is probably a combination.

Our next step is to get a swallow study done (we just did one in January) and a UGI, which means she will swallow dye and they will see exactly where everything is going. We have an appt. Wednesday for the UGI, and the swallow study is on Friday 4/29. I asked what he thought of Reglan, which I know alot of RS girls take for reflux. He said no way. The side effects are too severe, especially for an RS girl. I tend to agree after reading about it, but wanted his opinion. It can cause neurological problems, jitters, delayed response and much more. All things Amber does on a normal day. She doesn't need any help.

The pulmonologist is faxing over all info to the doctor in Texas today. Also, I have a call in to the doctor in Texas. I definitely want, what is this, a third opinion. I am hoping someone will say something other than fundoplication and g-tube! I am also making an appointment with the surgeons who would perform the fundo. and g-tube just to "talk". I voiced my concerns about the fundo not working and there being so many problems. He said I am right, but he believes it sometimes doesn't work well with kids that are more "normal", not kids like Amber that really need it. I said, what about the g-tube and no fundoplication. He said absolutely not. He said she would reflux much more with a g-tube and no fundo. Oh well, I tried. So we will get together again in May with the GI doctor and the pulmonologist to make some decisions. I notice Amber doesn't throw up or cough as much the less she eats. Also, she has lost another pound. That's 3 1/2 pounds in about a month.

On a positive note, Amber couldn't have been happier today. She was giggling and laughing the whole time at her appointment. She was full of personality. I left all the other kids at home and it was WONDERFUL. I actually got to have a conversation with the doctor without being interrupted.

Friday, April 15, 2005 1:42 PM EST

Finally we are getting somewhere! Amber tested positive for high levels from her PH probe. This means she has a good case of acid reflux even though she is on medication for it. The GI doctor is still recommending she get the fundoplication, which in turn means she would probably get a g-tube too. I am getting the results from him at our next appt. (in May) and will send them on to the doctors in Texas. When I talked to the doctor today, I told him I wanted to see what the doctors in Texas say. I hope he doesn't feel offended. It's hard to actually come out and say that. Aren't I basically saying I don't believe in what he is saying and I'm checking with someone else? I really like him and hope he understands. One time I told a doctor I was going to see what the doctors in Texas say and he said I needed to make a decision if I was going to use him or the ones in Texas. Guess who I chose. I'm still not sure the fundoplication is the way to go. Amber has been eating great since we got out of the hospital. Go figure.

I talked to the pulmonologist's office today also. I spoke with the nurse and didn't get real far with her. She wasn't giving out any more information than she had to. So I have an appointment on Monday to talk to the doctor so I can find out everything. What the nurse did tell me is Amber has a bacterial infection in her lungs by the name of haemophlas. Also, she is aspirating on her food. It is going into her lungs. We are increasing her breathing treatments to 2-3 times per day and they have prescribed an antibiotic. I know nothing else. She wasn't budging with any more information. I can't wait for our appointment.

So I feel great knowing that we are moving forward and getting results. We've been trying to figure out what is wrong with Amber for....is it 3 months now?

Thanks for checking in. It is very therapeutic for me to write about Amber and what is going on with us.

Wednesday, April 13, 2005 7:35 AM EST

We're home. We got home about 3pm yesterday. Monday morning they put Amber to sleep and were able to do a test where they go down with a camera and take pictures of her esophegus (sp?) and stomach. I have those pictures with me now. The pictures do show she is irritated by the reflux, but not bad. (Probably because of the medicine she takes.) Then they inserted a small wire through her nose that goes down to her stomach to measure her acid levels. This was kept in for 24 hours. While in the hospital Amber did alot of coughing and spitting up/throwing up. Not sure if it was because of the wire or because she didn't take her reflux medicine. She is still doing alot of the coughing now. Monday night I slept in bed with her. She often woke up coughing and throwing up. I had to keep changing her pjs all night. The doctor suggested she may be coughing on her saliva. Yesterday morning I was getting Amber situated in her bed and accidentally pulled the wire out of her nose because it was wrapped around her blanket. I was horrified to say the least. They had to put it back in without her being asleep. I felt so bad. I guess that's how they usually do it, but still... Then a speech/feeding therapist came in to watch Amber eat breakfast and give us some pointers on eating. We will be going to see him in the future. Also, I found out Toledo Hospital has a music therapist so I got his number. I am very interested in any type of music therapy for her.

At about 11:30 yesterday, Amber got the wire removed and went in for the bronch test. As we entered the "torture chamber", I had a sick feeling in my stomach. I couldn't stop looking at the table. It had this "thing" that had major velcro and they wrap the child in it so they can't move at all from neck to feet. That put me over the edge. I was tired and it just looked horrible. And the tube/camera going down her nose and into her lungs was huge. It didn't even look like it would fit in her little nose. I convinced them to use a smaller one. Then I asked for her to be put to sleep. They said she had been poked so many times for the procedure the day before that it would be more pain for her. Blah blah blah. So I told them I would be going back to the room and couldn't wait in the waiting room because I knew I would be able to hear her. I watched as they put her in that velcro contraption and she had no clue what was going on. As I walked down the hall I could hear her screaming. Oh how my heart ached. I went back to the room and had a good cry and prayed for her. She was only gone about 5 minutes. That was the longest 5 minutes of my life. I still get upset thinking about it. I don't want her to ever go through that again. So yesterday was a traumatic day for me and I don't think I'm over it, even though Amber is doing fine. I went to bed at 7pm and I still feel like crap. I have to say the nurses and doctors couldn't have been nicer and were all understanding.

So we will hear from the doctor in the next couple days. He will do our appointment by phone because he is going out of town for awhile. I will probably send the results to the doctors in Texas to see what they say also. I don't think they are going to be able to give me an answer for the coughing/throwing up. Just a feeling I've got.

Sunday, April 10, 2005 2:48 PM EST

Tomorrow we go in the hospital for our tests. We will be there at least 1 1/2 days. Amber can't have food or drink after midnight tonight. We have to be there at 9:30am, and the tests start at 11am. That is going to be tough. It's at times like this that I hope she understands me when I tell her she can't have a bottle and why. I am dreading tomorrow morning just because I won't be able to make her happy.

It is such a beautiful day today. Just puts you in a good mood knowing that summer is on its way, even though there is so much not so happy stuff going on around us. I feel such a sense of peace after being in church today. What would I do without the Lord who gives me that peace that I can't explain. We spent yesterday with Aunt Barb. She is my mother's identical twin sister. She has had ovarian cancer for six years now. It is in her liver and now in her brain. We are valuing each precious day we have with her. It is such an inspiration to hear her closeness with God. How would we get through the trials in our life without him? I know some people do, but they don't handle things quite so well, do they?

Jesus said, "Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27

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Thursday, April 7, 2005 10:59 PM EST

Another mother contacted me about the fundoplication (fundo wrap). She told me about an awesome website that tells all about it. I have lots to learn. When getting the fundo wrap, Amber wouldn't be able to burp or vomit. (At least the first few months.) A g-tube is often used to let out the gas. I didn't realize a g-tube was used for anything other than nutrition. I know without a doubt that Amber would have problems with gas. Thank God for other mothers. I learn so much from them. I will read up on this before we go in the hospital on Monday so I can drill the doctor with my new-found knowledge. He'll love me!

Thanks to everyone who signs the guest book. It is great to see who's reading about us.

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Tuesday, April 5, 2005 10:49 PM EST

I spoke with the GI doctor today. I told him Amber was not eating well and had lost weight. He was able to cancel another kid's appt. on Monday and coordinate with the pulmonary doctor so Amber gets her tests done 4/11, instead of 5/2 in the hospital. Yeah! He said she needs to get a fundoplication and a g-tube. See! Didn't I say that was where this was leading? Anyway, I told him I wasn't ready for a g-tube and she still is able to drink a bottle and isn't it Pedia Sure they feed through the g-tube. He said as long as she will drink it, he's ok with that. Whew! He said if I give her 4-5 cans a day, she should be able to gain weight. I will still try to feed her food, but at least the pressure is off and I know she is getting her nourishment if she decides not to eat. So I feel good that all my phone calls today got us somewhere. Oh, by the way, a fundoplication is when the opening from the esophagus to the stomach is made smaller, which then helps prevent reflux. I know it is very common for girls with RS to get it done, as is a g-tube. I am so happy I can hold off on the g-tube for now, if not forever.

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Monday, April 4, 2005 7:53 PM EST

Amber gets weighed periodically at her special day care, Prescribed Pediatric Center. She was weighed today and she has lost 2 1/2 pounds. This really concerns me since she hasn't been eating well, along with the coughing and throwing up. Meal times are a nightmare anymore. Tonight I just gave up and gave her a bottle of Pedia Sure. I tried to feed her, but she wouldn't stop rocking back and forth. Meal times are a game for her. I don't know what's going on. I know many girls with RS end up getting a g-tube and I'm afraid that is where this is all leading. I will have to call the doctor tomorrow. Other than that, Amber is very happy. I just wish she would realize she has to eat. I have heard how much easier a g-tube is. No, no, no. I don't want it. I want to throw a temper tantrum right now. Sorry I'm so depressing today.

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Saturday, April 2, 2005 8:07 PM EST

Yesterday Amber couldn't keep anything down. She coughed lots and was gagging all day. She got to the point where she wouldn't even take a bottle. She is doing much better today. I don't know if she was sick or if it was her usual problems.

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Thursday, March 31, 2005 3:09 PM EST

Amber has been doing well. She has been so alert and we have been really playing in the evenings before bed. She giggles and laughs and is just plain silly. I have been singing to her and she loves it. (At least someone likes my singing.) Her looks just melt me. She looks deep into my eyes, looks away and then looks back. It is too cute. I believe she is more alert because we are going off the one seizure med. She still has the cough. We have started breathing treatments at night and it seems to be helping. She will go into Toledo Hospital for tests on 5/2 and will stay at least one day. That's the soonest they could get us in.

I am so sad today. Terrie Schiavo died from dehydration and starvation. Disabled people need to beware.

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Monday, March 28, 2005 2:53 PM EST

Today we saw the pulmonologist. I took our x-ray of her lungs that was taken at Urgent Care a couple weeks ago. I didn't feel the x-ray was a good one. I know NOTHING about x-rays, but it was crooked and the nurse had so much trouble taking it. (This was actually the second one, because the first didn't turn out.) So I requested another one be done today. The nurse couldn't figure out why I would need another when Amber just had one a couple weeks ago. I said fine, we won't. When the doctor came in, he takes one look at the x-ray and says "That's the worst x-ray I've ever seen." Guess what? We got another one. Silly me always going with that crazy mother's intuition. It gets quite frustrating to always fight for Amber and make sure everyone is doing right. Anyway, Amber will have to go in the hospital for more tests on her lungs and her acid reflux. We will get a call on the date and time. By the way, she does have mucous in her lungs. We will start giving her breathing treatments tonight.

I am still outraged about the T. Schiavo starvation. Day 10. I say she WAS one healthy woman to last this long and certainly hasn't given up. This is how long it takes when someone isn't terminal and wants to live. This is a tragedy.

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Friday, March 25, 2005 4:15 PM CST

I have been very sad all week and my headache won't go away. My heart ACHES for the family in Florida who is being forced to starve their daughter to death. I am crying daily for this family. The woman was not dieing. All she had was a feeding tube. How many people do I know that have a feeding tube. That's it. You just decide the person wouldn't want to live that way and she gets to starve to death. We wouldn't do that to an animal or a person on death row. We spend money saving beached whales, but we won't save a human life. I am disgusted that more can't be done for this family. One judge has way too much authority. I'm sorry, but this is hitting too close to home for me. MANY girls with Rett Syndrome have a feeding tube. What happens to those girls if the caregiver decides it is just too much to take care of her and she wouldn't want to continue on. I'm not over-exaggerating. It HAS come to this now that this woman has been allowed to starve to death.

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Thursday, March 24, 2005 7:30 AM EST

Hi Everyone. Amber is doing a little better. She is still coughing, but not throwing up quite as much. We have her on quite a bit of medicines for reflux and coughing. Also, she is on antibiotics again to get rid of her ear infection. The nurse in Texas told me if she is having problems with reflux, the ear infection will be hard to get rid of because of the drainage from the ear and the backing up from the reflux. We have an appointment with a pulmonologist on Monday. The GI doctor wants to know what the pulmonologist says before he does anymore. And the doctors are also waiting on the pulmonologist's report.

Tuesday we went to therapy. We are only going once a month until summer and then we will start going weekly again. It is just so hard getting her there so we are taking a little break because of everyone's schedule. She gets therapy at school also, so she is not totally missing out.

Anyways, she did her usual Therapeutic Listening during her physical therapy. I guess after not getting it for awhile, I really noticed some things that happened. That same day her teacher told me she actually said "no" when they were trying to get her to do something. Then the next day when she was at PPC (her special day care) they said she got up on her hands and knees and took two steps. Then today when I walked in the room at preschool, she said Ma Ma! That's exciting stuff for us! She had an exceptional day yesterday. Lots of eye contact and lots of giggles and smiles. So I got the book on Therapeutic Listening from her therapist and I am all ready to read up on this. Also, I am going to get her the CDs and headphones so we can do this at home on a daily basis. I really believe in it. I am so excited to give this a try.

About Therapeutic Listening: All of the senses (touch, movement, smell, taste, hearing and vision) facilitate an individual's understanding of the world and enhance skill development. Using sound can stimulate brain processing, which in turn helps develop skills and higher cognitive function. Movement of receptors in the middle ear are responsive to vibration. The movement system (vestibular system) has a tremendous effect on total brain functioning and higher learning. There has been lots of research on this and her therapist has gone to the workshops, so she will be able to direct us on the proper usage of everything. I just have to get the money together to do this. Of course, it ain't cheap!

I could go on an on, but that is it in a nutshell. It is much more than just listening to music. I know Amber responds to music because when I play the Baby Einstein videos (Mozart, Bach, etc.) she can be in mid-cry and stop immediately when the music comes on. As soon as the video stops, she will start crying again. Music has a HUGE impact on her.

As always, thanks for stopping by.

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Sunday, March 20, 2005 9:51 PM EST

Today was a day like the old days when Amber cried and cried. I ended up taking her to Urgent Care. The coughing and throwing up is out of control. No one seems to be able to help us. It seems to be alot of guess work and I am getting very frustrated. Amber is going on her third round of antibiotics. The ear infection will not go away. We have an appointment with a pulmonologist on 3/28. I am hoping to get us in sooner. Her GI doctor and Dev. Spec. both recommended we go to one in the hopes that he can help us with the coughing. It is still possible this is all because of her acid reflux. I don't know why, but I keep thinking there is more to her coughing. I feel so on edge from all the crying. There is such a loss of control and the crying really gets to me. Just think how Amber feels. She is crying and crying and SHE knows whats wrong, but I don't. I just tell her I'm trying to help her. Tonight I gave her nine different medications. That is crazy. I want the old Amber back!

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Tuesday, March 15, 2005 5:57 PM EST

We saw our neurologist, Dr. Nagel, today. After much discussion, we are going to start weaning Amber off the Dilantin. I pushed for this. I don't like the possible side effects--excessive body hair growth and thickening of the gums. Amber already has a hairy body, she doesn't need any help! We are going to raise her other med, hoping that is all she will need to control the seizures. The weaning process will take over a month. Let's pray she will continue to be seizure-free! If this doesn't work, we will get her going back on the Dilantin and figure something else out. Well, that's the game plan.

I am getting used to the wheelchair. It certainly supports her better and is so much easier to push than a stroller. Although I wouldn't know as the kids fight over who gets to push her.

Amber still has her cough, but it seems to be getting just a tad bit better. She isn't throwing up when coughing....but almost. I guess I'll give it another week.

Today a student came from BGSU to interview us for a paper she had to do. We are on a professor's list at BG, so we will probably do this every year. I am always eager to tell someone about RS. The more people that know, the better.

Thanks to all who signed the guest book. I love to see who's out there.

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Friday, March 11, 2005 10:34 PM EST

Amber still has a bad cough. She is taking a very strong prescription that totally knocks her out. (That's not all bad!) I am giving her 1/2 doses and it does seem to be helping the cough.

I finally put some new photos on the website so check them out!

Tuesday, March 8, 2005 5:08 PM EST

We finally got Amber's wheelchair today. We ordered it in July. It was so hard to listen to the directions on how to use it, etc. I wanted to cry. I don't know why I put so much effort into not crying. I guess I was afraid if I started, I wouldn't stop. I'm happy we got it, but I'm not happy about it. It looks so handicappish. (I think I made up that word.) We are definitely making a statement with it. It is a cute color. (I had to think of something positive to say about it.) It is Bubble Gum Pink. I think it looks more like a pink/purple.

After picking up the wheelchair, I took Amber to the doctor. Her coughing isn't any better. They took an x-ray of her chest to check for pneumonia. Nothing there. She does have a double ear infection. The doctor feels the cough may be from drainage. I think there's more to it. I will give it another week, and then probably take her to the gastroentenologist. (Did I spell that right??)

Please sign the guest book. I love to see who reads my ramblings. I have no idea who checks in anymore.

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Thursday, March 3, 2005 7:40 PM EST

Today we saw Dr. Ratliff-Schaub for the last time. (in Toledo at least) She is moving to Columbus, which is about a 3 hour drive from here. I am so disappointed. This is the doctor that has been with us from the beginning. She diagnosed Amber. I plan on continuing to take Amber to her, it just won't be quite as often since she will be so far away.

Amber has a cough that is pretty bad. It has been going on for over a week. The doctor says her chest is clear. She coughs so hard that she isn't able to catch her breath and her face turns real red. We are going to try a vaporizer in her room. Not sure what is going on with that. We will call the doctor in a week if it continues so that we can further investigate it. There is a possibility it has to do with her reflux, but I don't think that's it.

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Thursday, February 24, 2005 2:23 PM EST

We applied for a couple waivers a while back for Amber. These are through the state. If and/or when we get one, it will give us a certain amount of money each year for respite care, home adaptions, etc. I called today to see where we are at on the list. For one waiver we are number 327 and for the other we are number 55. This is not encouraging at all. In the last year I was told they released 2, yes 2, waivers and we are number 327. So I guess we won't be getting that anytime soon. I am starting to think about how we are going to care for Amber. We will need a ramp to get her in the house with a wheelchair, a chair or something to bathe her in or adapt the bathroom so we can wheel her into the shower, adapt the van so she can ride in the wheelchair in it, get her up and down the stairs. I'm not stressing about this.... but it sure does give us something to think about. I guess I am thankful that there is at least some help out there at some point in time. The philosophy is they want to keep her home with us instead of institutionalizing her.

On a more positive note, Amber is doing great. She is so happy and she seemed to say "yes" a couple times today. Even at school she answered yes to a question. Tonight we go to a dinner with her preschool class that is held there.

Oh and how could I forget, NO SEIZURES!

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Tuesday, February 22, 2005 3:25 PM EST

I took Amber to the doctor today. She has a cyst down in her groin area. She has started antibiotics. She is miserable and it must be very painful. She was up lots last night and she won't eat much today. If I hold her, then she really starts to cry as it makes it more painful. She is shaking alot too. Poor girl always has to be going through something!

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Friday, February 11, 2005 10:53 AM EST

Amber is still doing great. She slept alot and was "off" yesterday. Seemed very out of it. She is at PPC (Prescribed Pedicatric Center) and seemed ok this morning so hopefully she is back to normal.

Jay is having a BAD headache. It has lasted for about 4 days. Aleve, Tylenol and Advil aren't working. We have a call into the doctor.

The Rett Syndrome Assoc. called me and the bracelets are in. You know, those bracelets everyone is wearing that are colored. Ours will be purple and say "Care Today, Cure Tomorrow". (I think) If anyone wants one, they are $3.75 each. Let me know or you can order from the RS website. Thanks!

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Tuesday, February 8, 2005 9:14 PM EST

One month ago today Amber had her first seizure.

Other than that, no news is good news!

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Monday, February 7, 2005 10:09 PM EST

Today we got a call from the nurse for Dr. Glaze in Texas to see how Amber is doing. (How nice!) I told her about the couple of breathing episodes Amber has had where she turned blue. She told me this is normal for a girl with Rett. She said they have patients that sometimes quit breathing and actually pass out, and then they start breathing again. Amber already has irregular breathing, and this is just a new dimension to it. I was happy to hear that this is normal. I feel better about it. This is just another reason I am so glad we went to Texas. Doctors here would never tell us this is normal.

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Thursday, February 3, 2005 4:47 PM EST

Hi everyone! We saw the doctor on Tuesday to talk about the sleep study that we did the week of Christmas. Basically there is no sleep apnea going on, but he felt there might be a problem with seizures and acid reflux that was interupting her sleep. I'll say! So we are taking care of both and we don't need to go back and see him again. Yeah! By the way, Amber is now sleeping through the night. She usually goes to bed around 8 or 9 and wakes up about 5am. He prescribed some medication (Elidel) for Amber's eczema, which seems to be working great.

Today we saw the neurologist, Dr. Nagel. The medications are working great. I take her in tomorrow to have her levels tested. If her levels are too high, he will lower her dosage, even though things are going well. You might remember he wants her levels somewhere between 15 and 20. This is so she won't be toxic. She will stay on these medications for the time being, but will have to go off the Dilantin as it has negative long term effects. We are going to wait a couple months before doing that. The goal is for her to have enough of the other drug (Zonegran) in her system so that she will still be seizure-free.

Amber is getting back to her normal self. She has been so happy and seems to be getting back to normal at school. Today I watched as she was able to hit a switch that was pre-recorded by the teacher with each classmate's name. Each time she hits the switch, a student's name is called and they get their coat and paperwork to get ready to go home. This is just another way Miss Kristen is able to make Amber be a part of what her classmates do. Each day a child announces the other classmates names as they wait their turn. It was so cool to watch and see how much Amber was concentrating to hit the switch. Things that are so simple for us, take alot of concentration and thinking for Amber. When I see her interacting like that, it gives me such hope that she can learn and communicate with us.

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Friday, January 28, 2005 8:50 PM EST

Wow! We made it another day without going to the hospital. Amber had an excellent day today. I think she might have had a seizure this morning, but that's it. I was in the other room and walked in just as it was ending. This evening she seemed so alert and was making such great eye contact. She was acting like she used to before the seizures. I think I will continue to have her sleep in our room at night. It is so scary to think she might be having seizures and we don't know it.

Mariah still has it coming out both ends. She is miserable. I have never had a kid sick for this long.

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Thursday, January 27, 2005 2:49 PM EST

Amber just hasn't been herself. She went to PPC (Prescribed Pediatric Center) this morning and they said she had a seizure and her lips turned blue/purple. I picked her up and got her levels checked. Her Dilantin is at 11.2. We want it to be between 10 and 20, so that is good, but has room to go up. So she will be getting more Dilantin. The doctor has also raised her Zonegran dosage. Since she has been with me, I have noticed two seizures. One she just seemed to be staring and then I realized she wasn't breathing. Her whole face turned purple. It totally freaked me out. Then in the car she had a seizure that seemed to be only the left side of her face. The doctor recommended we go to the ER, but since then she has perked up so I am going to wait it out for a little while. I hope I'm not being a bad mom, but I so want to stay out of the hospital.

Mariah is sooooo sick. She has been pooping and throwing up since Sunday. So far she is not dehydrated. She has gastroentinitis AKA Rota Virus. I took her to the hospital yesterday, after Urgent Care sent us there. That's another story in itself.

Well, we went six days without a seizure.

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Sunday, January 23, 2005 3:24 PM EST

Amber is doing well. Still no seizures. Yeah! Mariah is sick and has been throwing up all day. Hope she keeps it to herself!

I thought I'd write a little about Amber today. I notice people ask some of the same questions about things I take for granted. So here are FAQs.

Do we have insurance? Yes, Amber's medical expenses are paid for.
Why do we have to go to the hospital every time she has a seizure? We end up at the hospital because Amber's seizures don't stop, but get more intense and closer together. Reminds me of being in labor.
What are her seizures like? They start out on her left side only. By the third or fourth seizure, they are full body. This means her whole body is thrashing about and her eyes are usually rolled back. It is quite frightening.
Is there any damage done to her body by the seizures? We are told there is no damage unless the seizures last over a 1/2 hour or something like that. That is totally unacceptable to me. I think I would totally freak out of she had one that long. Currently Amber's seizures are under one minute, but seem like an eternity.
Is this normal for a girl with RS to have seizures? Yes, this is another "Rett thing".
Will she have seizures her whole life? Yes, most likely. It will need to be controlled with meds.

I know I promised to write about Texas, but I can't even think about all the details anymore. I have things wrote down, but it is somewhere in my many piles of paper. Sorry that I no longer have any of it fresh in my mind. Guess we've been busy lately! Just know it was a great trip and we plan on going back at least every couple years.

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Friday, January 21, 2005 7:25 PM EST

We are home again. Amber hasn't had a seizure since early yesterday. Her levels are up. Also, we are giving her a higher dosage of both her medications. This has to be done slowly so she doesn't get toxic. We are praying we can go for a very long time without seizures. The doctor was able to see at least one seizure on her EEG. I will call the doctors in Texas on Monday and let them again know what is going on.

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Thursday, January 20, 2005 3:12 PM EST

We are in the hospital again! Amber started having seizures at 10pm last night. We got here by 1:30am. We had it figured out that we would be able to go home after Amber getting an IV treatment of Dilantin and no more seizures. We were all ready to go at 7am. The nurse was literally taking the IV out and Amber had a seizure. I was SO disappointed. So we are back in ICU. Amber is getting a 24 hour video EEG. Since being in ICU, she has had two more seizures, even though her "levels" are now high enough. This means she has the right amount of meds in her system. So I don't know what we do next. This is unusual for her. Usually the IV treatments work for her. The doctor will be in tonight to talk with us. As always, she is in good spirits. She likes the hospital. We have made lots of friends here. I just picked up her Diastat. (valium) Here in the hospital I will learn how to give it to her. Hopefully this will help keep us out of here. Amber's brother and sisters are coming up to visit her. This will be the first time they have seen her in the hospital.

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Monday, January 17, 2005 10:45 PM EST

We are home again. The doctor didn't see us until 9 and we were home by 10. I really pushed for us going home tonight. Amber's EEG didn't look good. We had that done today. We are changing one of her meds. The doctors in Texas were not in today. I am anxious to talk to them and let them know what is going on. I want to see what they say about what we are doing. Amber was sooooo excited to be home. When we walked in the door, the kids and Karl clapped and said welcome home. She was kicking and shrieking. She was so excited to be home. Everyone loved on her. It was so precious to watch. We are praying there will be no more seizures for awhile. We need a break. I told the doctor I can't keep going to the ER and then stay in the hospital for days. The doctor said I will need to come to his office to learn how to give Amber valium rectally and all the precautions that go along with it. So glad he came up with this option. Valium definitely helps her as a temporary solution. For obvious reasons, we can't keep her on valium for any period of time, but it will buy us some time the next time she gets clusters of seizures.

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Sunday, January 16, 2005 10:56 AM EST

We are at the hospital again! We went in about 9pm last night to check her levels. One med was low and she was continuing to have seizures so they admitted her. We are hoping we get to go home tomorrow. The seizures are under control for now. They have increased her meds. The meds are supposed to make her tired. But Amber doesn't follow the rules. She slept off and on in between seizures when we got here, but has been up since 1am!!!!!! I am going on little sleep. She has been very happy, but refuses to go to sleep. I nodded off once in awhile in between her shouts of joy throughout the night. She was partying all night long. Grandma Bonnie surprised us and came to the ER last night. We had a few good laughs as we were tired and a little punchy. The doctors and nurses seemed to focus on talking to Grandma so we had to set them straight that I was the mother. We laughed hysterically over that one. While in the ER, we found out our nurse goes to Dayspring Assembly of God in Bowling Green. This is the church where we go for Jay's bible quizes! She promised to pray for us. We are in ICU again. This is because Amber will have her own nurse and needs to be monitored closely, not because she is in any real danger that usually goes with being in ICU. I am writing from the hospital. Was able to get my hands on a computer in the playroom. Our nurse in ICU is someone I went to school with 20 years ago. Also, we are down from the other boy that was in an accident. (I mentioned this family in a previous journal entry.) So here's hoping sleep will come today and we will be out tomorrow. Trying to keep my sense of humor. Thanks for checking in on us at Amber's website.

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Saturday, January 15, 2005 8:55 PM EST

Amber is having seizures again. I have noticed four today. The last one was the most severe. She is sleeping now and I am hoping she will sleep peacefully the rest of the night, although deep down I know she will have more. She has been extremely happy today and there is no warning when she has a seizure. She even had one in the bathtub. I called the doctor and if this continues we will need to take her to the ER again. They will test her levels. I think this will show if she has enough medications in her system for her age and size. I knew she would have more seizures, but I didn't think it was going to happen this quickly.

Don't forget to read the journal history and sign the guest book.

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Wednesday, January 12, 2005 9:56 PM EST

We went to our neurologist today. He talked to us about how we will be adjusting her meds over the next month. Her swallow study looked good. She seems to be doing well in that area. The CAT scan was fine and the EEG was normal for a girl with RS. (which is abnormal) I thought, Gee, it sounds like we have a perfectly normal girl! We will be getting an EEG in another month, blood work next week and we see Amber's primary care physician next week. Amber has been very happy. She sleeps each time she gets her medications. I think I got about 8 hours of sleep last night. I can't remember the last time that has happened. She went back to school today and seemed to enjoy herself. Hopefully life is going to get back to normal. Amber starts horse-back riding back up tomorrow. We have seen a huge decline in her leg muscles since she hasn't rode since the end of November. The seizures didn't help either.

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Tuesday, January 11, 2005 6:31 PM EST

WE'RE HOME! What an experience we had. We love our doctor here and she was so wonderful. She contacted Dr. Glaze in Texas and he gave his recommendation on what meds Amber should take long term. She is on two medications now and we are slowly taking her off the one that she was taking in the hospital by IV. She is now taking it orally. We hope to only have her on one medication eventually. We have not seen a seizure since Saturday. (I think.) We will now watch her closely. She is VERY shaky. We are told it is her body adjusting to the meds. Also, her left side seems to be saggy and more floppy than the other side. We hope that goes away. While in the hospital we ran into a few people we knew. What a surprise! One was a boy in Amber's preschool class! Today Amber got a swallow study done (just one of the many recommendations they gave us in Texas). While waiting in the hall, a woman approached us and said Amber was adorable and what were we in for. I said seizures. Then Amber started putting her hands in her mouth so I felt the need to say "and she's also handicap". The woman said "Oh what is her name and we will pray for her at church on Sunday". I was so touched. It seemed as if the Lord was continually reassuring me he was there for us through little happenings like that during our hospital stay. It was hard to feel sorry for ourselves when we saw others suffering so much more. A family from our church was there. They had relatives in the hospital, a mother and two boys, that were in a car accident. It was such an emotional time to hear what they are going through and what they will be going through. Amber was right next to one of the boys in ICU! The night I found out was the night Amber didn't sleep well. Every time I woke, I prayed for that boy. Our prayers can be so powerful and I don't feel our rooms were next to each other by accident. I still haven't shared about our trip to Texas. I guess that will still have to wait for another day. It sure does feel good to be home. Can't wait to sleep in a bed!

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Sunday, January 9, 2005 1:59 AM EST

We took Amber to the ER Saturday afternoon. Looking back, we should never have waited, but we were doing what the doctor said. Once arriving at the ER, she had a seizure immediately. That got us in quick! She had 6 or 7 in about an hour so they gave her valium, which helped alot. Some of you may not know, but valium is an anti-seizure med. The seizures are now under control. She is receiving medication by IV. We are anxious for our doctors here to talk to the doctors in Houston to see which medication Amber will go home with. We are being told she will be in the hospital at least until Tuesday, mostly likely Wednesday. This was a scary time watching Amber go through this. It really wiped her out with each one. It still doesn't seem real every time I think of what she looked like during a seizure. For the record, Amber will most likely have seizures the rest of her life. We will continually try to keep them under control. As always, I try to look at the up side of things. What if we lived in a country without doctors, hospitals, and seizure medication. Thank God for the USA!

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Saturday, January 8, 2005 7:55 AM EST

Amber is definitely having seizures. It went on all night. She slept in bed with us. It is quite scary, but it has helped knowing that this could happen. We have been in contact with her doctor here in Toledo and will be calling her again this morning. We may end up in the ER, but I am trying to get around that. She needs to have an EEG done to see what type of seizure she is having, so they know what to do from there. The EEG won't be able to be done until Monday. I will make sure the doctor in Houston is in on all the decision making for this.

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Friday, January 7, 2005 7:16 PM EST

We're back from Houston! It was such a productive trip. I have so much to tell, but it will have to wait. Amber will be starting some new medications and doing more intensive therapy. We learned so much. We were at Houston Hobby Airport by 5am today to catch our 6:30am flight so it has been a long day. While at the airport, we believe Amber had a seizure! We couldn't believe it and since we were so tired, we thought maybe we were imagining things. Well, since then she has had three more. I put a call in to Judy at Dr. Glaze's office in Texas, but probably won't hear from her until Monday. Hard to believe this happens AFTER we left the doctors in Texas. And after looking at her paperwork, determining what we already knew, that Amber doesn't have seizures. Surprise! We knew they could start at any time, but geez Amber, what timing! Can't wait to let you know about the whole trip. Will have to do it another day. Need to unpack now.

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Thursday, December 30, 2004 2:54 PM EST

We just got the preliminary report on Amber's sleep study. This is what we will take with us to The Blue Bird Rett Center at Baylor College in Houston, Texas. We will have an appointment with the doctors here in Toledo on February 1 @ 3pm regarding the study. It is quite interesting, although I don't understand all of it. During the sleep study, it shows she slept a total of 414 minutes (6.9 hours). Her REM sleep was 2 minutes during that time! It also says she had 60 sleep stage shifts (what does that mean?), 26 awakenings during the night and possible seizure activity. Can't wait to learn more about all this!

So we are getting ready for Texas. We hope to keep everyone updated from there. We leave Tuesday, January 4 at 9:30am out of Cleveland. Stay tuned....

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Wednesday, December 22, 2004 5:59 PM EST

We did the sleep study last night. Amber had a rough time sleeping until 12:30am and then was able to sleep until 5:30am. That is great for her. She has been quite tired and out of it today. There are no results on the sleep study yet. The doctor promised me he would get some info to us next week before we go to Texas so we can take it with us.

Two days ago (December 20) she started doing some irregular breathing. She seems to be holding her breath and/or hyper-ventilating. I know this is common in girls with RS, so I'm not too worried. I decided to call the doctor (Dr. Ratliff-Schaub, who diagnosed her) and she said there is nothing to worry about. Looks like this is just another page in Amber's book of life.

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Monday, December 20, 2004 9:56 AM EST

Amber was up all night. I quit going in to her after about the fourth time. Sometimes I could hear her laughing, other times she was crying. We got her x-rays done today! Yeah! We need them for the sleep study tomorrow night. Nothing like waiting until the last minute! I can't wait to hear what comes out of this sleep study.

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Wednesday, December 15, 2004 4:02 PM CST

Last night we went to Rehab Dynamics for their Christmas party. It is where Amber goes for physical and speech/communication therapy. Santa was there and Amber got to sit on his lap. Of course, she tried pulling his beard off. We saw another girl there with Rett Syndrome. I think she is 5. She walks with a walker. We couldn't help but stare. We just watched her every move. She seemed so "normal". It was exciting to see her getting around. We want Amber to walk so bad and we just know it will happen some day. She has improved so much in the last year. Her muscles are getting stronger and stronger and we see she wants to stand and be like other kids.

Yesterday I ordered a new type of arm splints to go over Amber's elbow. Her hands and face are raw from being wet all the time and the cold air. We put neosporin on her every night with socks on her hands. I can't wait to get her hands and face healed up. It looks so painful, even though she doesn't seem to be too bothered.

Amber woke up at 4:30am this morning. Will we ever get this sleep under control?

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Monday, December 13, 2004 10:46 PM EST

Today Amber got an eye exam. It is required for one of the programs she is in. I forget which one, but someone will be calling for a report soon! Possibly it is BCMH (Bureau for Children with Medical Handicaps). We never did get her chest and back x-rays done on Saturday like I planned. I can't seem to find time to get it done. Last night she slept better. Finally! She only woke up once. I turned the heat up. Who knows if that is the reason. I will keep trying different things. One thing about Amber is she is consistently inconsistent! Also, today I visited Equipped Kids. They offer special needs products on loan at no cost. We got a feeding chair as Amber can barely fit in a high chair anymore. They also loaned us a stroller-type wheelchair in August for her to use at school. We are waiting for her wheelchair. It is custom made and they tell us it will take up to six months to get.

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Saturday, December 11, 2004 9:21 AM EST

Amber had a rough night sleeping. I was so tired and went to bed at 9pm after a long emotional day. A friend of ours from the campground had passed away and I drove up to the funeral and came right back home. Amber was up crying by 9:30. I got her right back to sleep and then she was up between 12am-2:30am whining. I finally gave her some medicine to help her sleep, but she was up by 6:30, happy as can be, I might add. Needless to say she is now taking her first nap of the day already. We are documenting her sleep patterns as part of her sleep study. It isn't easy! I didn't realize how many cat naps she takes in a day....15 minutes here, 15 minutes there.

Amber is doing well at school. Miss Kristin told us they made pancakes last week and when it came time to eat what they had made, a few kids were ahead of Amber and Amber didn't like that one bit! She put up quite a fuss and as soon as she got HER pancakes, she was happy. We sure do like to hear stories like that. We like to hear how much "spunk" Amber has and that she definitely has an opinion!

Today we are going to attempt to get x-rays of Amber's chest and back. I have put this off far too long. The x-ray of the chest is part of her sleep study and the x-ray of her back is for scoliosis, which girls with RS are prone to have.

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Thursday, December 2, 2004 4:53 PM EST

Our appointment for the sleep study is December 21. We will go in at 6:30 pm and leave the next morning whenever Amber wakes up. Not looking forward to doing this so close to Christmas, but we need to get going on this so we can take the results with us to Texas. The best part is.....mom gets to sleep in a bed, not a chair!

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Tuesday, November 30, 2004 5:26 PM EST

Today Amber went to see a sleep specialist, Dr. Reddy. We really liked him and hope he can help us. It is so great when we meet a doctor we like. He seems to know quite a bit about Rett Syndrome too. He thinks part of the reason why Amber is waking up during the night has to do with GERD (acid reflux). She seems to cough and wake her self up often. I figured she was choking on her saliva. He disagreed. I know one of the symptoms of GERD is coughing. I just didn't think that was the reason for her waking up. But when she is lieing down, it definitely could be aggravating her reflux. Also, I have pretty much discontinued giving her all her medications (including the ones for reflux), so before bed I will start giving her something to see if it helps. So we will be doing an over night sleep study to see what is really going on when she sleeps. And then we will take the results with us when we visit the Blue Bird Rett Center in Houston, Texas, in January.

The best part of the whole visit was Amber got a flu shot and she didn't cry! They tried something new. They used a "shotblocker". I wouldn't have believed it had I not seen it. It is this piece of plastic with little things poking out so it puts pressure on the skin. There is an opening in the middle for the shot. The shot must be given within 20 seconds of applying the shotblocker. It worked! Amber didn't cry! Supposedly it sends a message to the brain that there is some discomfort/pressure there; therefore, "tricking" the brain when the shot is given. They let me take it home and said to use it the next time anyone in the family needs a shot. I think the doctor and nurses were just as tickled as I was that it worked.

For the time being, we are going to try to keep Amber on a better schedule. That means, on the few mornings she wants to sleep in, I will have to wake her up. That will be a hard one! Our next step is to get some x-rays done and wait for the call to set up the over-night study.

One more thing. While the doctor was checking Amber out, she pulled his glasses right off. I couldn't help myself, I immediately said "Way to go Amber!" It was kindof funny. Then I said to the doctor "Pretty good for a girl who supposedly can't use her hands real well". Amber got a kick out of me cheering her on and laughed and got excited.

Thanks for checking in on us! We will keep you posted!

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Saturday, November 20, 2004 7:43 AM EST

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