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| Amber's Life |
Amber's Life:In August of 2002, Jamie (Amber's Mommy) started writing an online journal that she shared on a private, Internet forum with other mommies. Her last entry to the journal was made on July 3, 2003, the day before the accident that took Amber's life. At times, Jamie's words expressed deep frustration and coarse emotion; at other times, her words revealed the pride and sheer delight of a young mother sharing the tiny, fleeting accomplishments of her disabled little girl, which seemed almost insignificant in comparison to "normal" children. But, to Jamie and Chip (and Nana Margie!), Amber's accomplishments were Herculean because she really did more than she was capable of doing and because she never stopped trying! It is with our deepest love and our highest esteem of Amber that we share Jamie's Journal with you. August 4, 2002 3:03pmAbout me and my family August 4, 2002 11:53pmThe beginningI'm going to start
from the beginning here. I'm just going
to take it by the problem she has or had
and bring it to where it is today.
[Insert from Nana Margie] The following Sunday, November 22, 1998, our family met Dr. Paul Walker at Mount Paran Central Church of God in Atlanta where Dr. Walker led a special prayer for Amber's healing from blindness at the close of the 11:00 am service. We noticed an improvement in Amber's vision the very next week. Whereas before, you could have literally stuck your finger in Amber's eye without so much as a defensive blink, now she seemed to see things ever so slightly. At first, we noticed her staring at light, and later she began to focus on faces. [End of Insert] Because of her vision problems, we scheduled an MRI of Amber's brain on November 25 to see if everything looked ok. It came back that her brain and eye structure were normal. It also showed that she had a slight amount of excess fluid on her brain, but it was nothing to be concerned about. From there, we scheduled a Visual Evoked Potential (VEP) and an electro Retinal Gram (ERG). She had them done on December 17. The results, which were the best they could get from a baby so young said that she had a decreased vision potential in the moderate range.
August 5, 2002 1:26amThe beginning Part twoBack again to 1998. Remember we knew that Amber had vision problems, and we figured her delays in most things, not smiling, tracking etc. was coming from that. Well, December 21, 1998, Amber woke up with a fever or 103-104 and was convulsing. I would later find out that she was having a febrile seizure, which is a seizure that happens when a child's body temperature spikes up. I freaked out! My mother-in-law (Nana Margie) suggested that I give her a bath to cool her down, and then I took her to the doctor right away. He told me that I should take her right away to the Children's Hospital at Scottish Rite and have blood and urine tests done and a spinal tap to check for meningitis. I was really freaking now! Oh my gosh; they were going to stick a needle in my 4-and-a-half month old baby's back! And, it could be for meningitis! We got the test results back, and
everything came out normal! Thank GOD!
We stayed in the hospital overnight so
they could observe Amber because the fever
had to of come from somewhere! The next
day, they gave her an EEG test to make
sure her brain was functioning normally,
(no seizures) and her results were
normal. This was her first visit with a
pediatric neurologist. We found out
later that the high fever came from a
urinary tract infection. She was put on
an antibiotic, and we were to come back
Jan. 11 to get it rechecked to make sure
it was gone. It wasn't, so we were told
to continue to give her the antibiotic.
August 5, 2002 1:53 amTodayI kept a record of everything written down in a notebook up to this point. Since then, Amber has had test after test after test, and we still do not have any sure answers to why she is the way she is. At 4-years-old, she still is unable to sit unassisted, talk, walk etc.. She has made very small progress compared to "normal" development, but it is HUGE to us! Within the past year, she as been putting more weight on her legs, reaching and taking things from you. She's finicky about when she will take something, but she can and will most of the time. She sits up better than she ever has before, although she can't do it alone yet. She babbles and laughs and smiles. She LOVES her VeggieTales videos. She would watch them all day long if I let her! She cry's when one ends until I put another in for her, LOL! On June 17, Amber crawled for the first time; she was on the floor in the den, on her knees with her hands behind her, head on the floor, and she crawled using just her knees. She made if from the couch to the recliner, about 4 feet. I was stunned! She never seemed to have any inclination to do anything like that before!! I'm so proud of her. Since then, she has done it a couple times across the room at my insistence, LOL. She didn't like it one bit, but she did it! I'm just so happy that she is trying more now! Jacob is such a sweet boy. He has his moments, but generally, he's a sweetie pie. His development has been right on track, which I am very happy for. He likes to help me do things for Amber. He is starting to show interest in the potty and has gone in it twice. (I'm so proud, LOL!). I hope he keeps it up! I sometimes wonder if Amber looks at Jacob and wishes she could run around and stuff? I have been thinking lately about what I will say when the time comes when Jacob asks, "Why can't Amber walk and play like other kids?" I don't know what to say; a little kid isn't going to want to hear the long version. Hell, I really don't even know why she can't walk and play like other kids, so what can I tell him? I'm sure when the time comes, I'll know just what to say. I keep having people remind me that God has a reason for all of this. I believe that He does, although it's hard to keep that in the front of my mind when I see other "babies" her age learning to read and tie their shoes, go to school, and she cant even sit by herself; yet, I know that she will, though, one day - she'll be able to! It will just take time and patience. Through all of this, I am so glad for Chip and my mother-in-law, Margie. Chip is such a good dad: Amber is his little princess, and Jacob is his little man, LOL! Margie has gone to most all of Amber's appointments, mainly to offer support and advice. And since Jacob has been here, she has offered to watch him when I have appointments for Amber and to watch Amber when I have appointments for Jacob. I can't imagine the chaos of having to take them both to all the appointments! What a nightmare LOL!! August 5, 2002 1:59amToday my little princess is 4!!It is so hard to believe that I have a 4-year-old! She's such a cutie, we took her to have her pictures taken on 8/4, and it was so hard. I was sweating like a pig! We managed to get 3 cute ones! I ended up spending a fortune though.
We took her swimming at the aquatic
center today, she loved it, even though
it was freezing. We are used to the
water at the senior aquatic center where
the water is always very warm. Jacob
hated it. I made him go in anyway. It
took him at least 20 minutes just to get
used to it, and he still didn't like it
very much; but, at least, he wasn't
screaming. Amber ended up getting this gear toy, a couple outfits, and a pull toy for the side of her bed from us. My dad sent her 100 dollars, and I got her a little recliner so she and Jacob would have one and a few other things. My mom got her a little outfit, Jacob a pair of jammies, and 20 dollars. Chip's mom got her a Barbie doll, 4 pairs of pajamas, a little bear rug, and an adorable dress that she wore today. Chip's grandpa sent 50 dollars, and my grandma sent a couple of outfits. They are down at my moms and I will get them next weekend when we go visit her. Chip's other grandma got her the new Veggie Tales video. I cant wait to play it for her! I know she will like a different one! We took her to Piccadilly, and she was so tired from swimming that she was a total crab. She whined nearly the whole time. She cheered up some when I gave her some cake, and so did Jacob. That boy obsesses over cake! Overall she had a very nice 4th birthday! August 5, 2002 12:10pmCHIP COME HERE!!!LOL! This is Jacob's greeting in the mornings. He wakes up and screams: "CHIP, NAMIE COME HERE!" ALLLLL DONE!!!!!!! (meaning he's all done sleeping!) It's too funny. I tell him he needs to say, "Mommy and Daddy." He normally does, but I think he says the other because he knows that we think it's funny. August 8, 2002 10:56pmWhat is wrong with his ear??I was walking behind Jacob in the hallway and noticed that his ear looked funny. I asked him what was wrong with his ear (we were walking, and I couldn't quite make it out). He started running from me with his hands over his ears. I caught him and saw that he had a penny shoved in his ear!! I have no idea where he got that idea LOL, it was too funny. I gave him back his penny and as he was walking away he was putting it back in his ear mumbling something about pennies and ears LOL! August 13, 2002 12:38amEMT SchoolChip has decided that he doesn't want to work for UPS forever and now wants to get a job as a firefighter. He took his Firefighter test on July 8 and didn't pass. There were over 300 men applying for 15 jobs. It was unreal. So now, he is going to go to school to become an EMT, which is the training he will have to have once he becomes a firefighter. That way, he will have a leg-up on all the other guys next time. And even if he wasn't chosen, he will still have a job as an EMT, and he can even go on to become a Paramedic if he ends up liking it. I don't know how he could like it (I couldn't handle seeing babies hurt, people hurt, anything hurt really). I guess knowing that you are helping these people and saving their lives would make it worth it, though. Anyway, we went to the school for an interview with the admissions people. I guess they don't just let anyone in that decides they want to go "on a whim" and then doesn't follow through. The interview guy decided that Chip was serious enough, I guess, because he made us an appointment to go for financial aid next week. I'm hoping that we will qualify for both of the federal grants (we are so much in debt right now, I don't know how we can add another 4500 to the pile of bills we already have). Our appointment is next Monday. I hope that it goes well for him. If so, he will be starting school in October! August 13, 2002 3:22pmOur first session and Amber doesn't feel well.Today, Chip and I went to talk to one of the pastors at our church about that time we were having problems. It was really kind of neat - the stuff he made us think about. He told us to think of two "little things" that the other liked, and then we had to guess what the other thought that they liked. I thought that Chip liked his hands rubbed, and his hair rubbed. He thought I liked hugs when he gets home from work and flowers (which I never get by the way, LOL - I get hugs but not flowers!). I was right in my guess. Chip was too, but that wouldn't be the first thing I would think of. My favorite thing is getting my hair brushed/rubbed, whatever. If I ever won the lottery, I would pay someone to just play with my hair, LOL! We also decided there that we needed to start praying together and reading the bible together (we have only prayed together alone one time that I can remember in our entire, almost 5 years of being married). I hope that Chip will take the initiative to actually do it with me; although, I think it's going to be a bit hard to start. I think we will benefit greatly from it in our marriage! I don't think Amber feels too good. She maybe be coming down with a cold or something. Last night at 3:30 am, she woke up screaming at the top of her lungs, and she felt like she had a fever, and she sneezed a few times. I gave her some Advil, and she went to sleep. Today, she seems like she feels a better, but she's still a bit moody. August 14, 2002 4:23pmI'm pretty disappointedI called to make an appointment for Amber to see her ophthalmologist (the one she has been seeing since she was 3-and-a-half-months-old), and they told me that she moved to Boston! That sucks; I really liked her a lot! I asked them if I could make an appointment with another pediatric ophthalmologist on their staff, and they told me they didn't have one. But, they said they would be getting one at the end of October, and I probably wouldn't be able to see her until the middle of November. Also, the office that I was taking her to is closing down, so I would have to take her to their other office (at least 20 miles farther!). So, I decided just to make an appointment with another doctor, and she will be seen next Tuesday. I hope we like this doctor as much as we did her first one. I also made Amber and Jacob a dentist appointment for tomorrow morning. I'm sure Jacob isn't going to take very well to it. Amber has been two or three times before, so I'm sure she will do ok; she never really likes it, but she deals with it, LOL! I decided to take them to a new dentist; the one that I have been taking Amber to has a messed up policy that the parents can not go back with their kids (I remember I always wanted my mom to go back with me when I was a kid). Besides that, I just don't like the fact that they wouldn't let me if I wanted to - it annoys me! I don't like giving them the control like that. August 15, 2002 3:07pmThe dentist appointment from hell!I took Amber and Jacob to get their teeth cleaned today. I let Jacob run around the waiting room and play with the toys and stuff they had. When they called us back, I put Jacob back in the double stroller to push them both back there (if I didn't, he would play his little "you cant get me" game). So naturally, he's all ticked off and crying. I put Amber in the chair and tell him to watch Amber get her teeth clean. That made him scream one of his high-pitched, squealy screams, which made Amber start screaming. Amber calmed down, and the lady was working on her teeth, and all the sudden, the lady was starts saying, "Ow, ow, ow, ow!" Amber had chomped down on her finger and wouldn't let go! I had to squeeze her cheeks to make her open her mouth. Now, Jacob is still screaming, so I hand him Amber's new toothbrush, and he takes it from me and whips it down on the floor and does another high pitched squeal. I'm holding Amber's head because every time the lady tries to do anything, Amber shakes her head "no," and as soon as Jacob did his little squeal, Amber starts to cry again. I told the lady that I would just reschedule Jacob for next month since he was already in such a grouchy mood, and he'll probably be a little "freaked" being his first time. She didn't argue with me, and I don't blame her! His appointment is near the end of September. I plan to bring him without Amber next time! August 20, 2002 7:23pmI just got in from taking Amber to a new ophthalmologist. I was very, very, very disappointed. My appointment was at 3:30, I got there at 3:15, and I didn't leave there until around 6:00! The lady kept telling me how difficult Amber was to examine, and I told her that was because we had been there nearly 3 hours, and I'm sure she was tired of it, LOL! She was so rude. I told her that her previous doctor was doing the muscle measurements for surgery to correct Amber's eye from drifting upwards. She told me that she wouldn't make a decision like that on the first visit, which was fine, but she just sounded like one of Amber's previous doctors that had the "I am holier than thou" attitudes. She didn't want to hear anything I had to say; she just kept telling me, "you know, the success of Strabismas surgery is only about 70 percent, and the success of the surgery to correct an eye that is a bit higher than the other is even lower than that." I told her that we had the Strabismas surgery, and it worked perfectly, and that I was willing to chance that this surgery may have to be done again to get it right. She said, "Well, I'm not willing to chance that right now; you know, it's my reputation too..." or something like that. Then, she told me, "You should never take surgery lightly..." like I just decided on a whim to have this done!! I've been contemplating this since Amber was 14 months old! I don't think that I'm taking it lightly! Anyway, I'm not going back to that office; I was just not impressed, even slightly. I will make an appointment with her old doctor's replacement in October and see how she is. I hope that we will have a better experience with her! August 28, 2002 12:56amI took Amber out and noticed that the stroller (her regular Graco) is WAY to small - her toes almost touch the ground, and her little legs and feet kept getting caught in the wheels every time I turned, and I know that it hurt her.
Poor baby. So, we can't use that stroller
for her anymore. I knew the day would
come when she would not be able to use
it anymore, but gosh, it came so soon. When did
she get so tall, LOL? 
I called to get a prescription for a
bigger stroller so that my insurance
would pay for it, and they told me that
they didn't think that the insurance
would cover it since she got a wheelchair last
August.
This wheel chair is great when Chip is
with me; otherwise, it takes me 20
minutes just to get it out of the car
and assembled! The thing doesn't fit in
other peoples cars unless you carry a
tool kit and disassemble it even more
than we have to to get it into our car.
(we have a wagon). And on top of that,
the thing weighs around 50lbs!!! I need
something so bad for when I need to get
in and out quickly, and when I go
anywhere in someone else's car. I hope we
can get her something. I will update if
we do.
Oh, I meant to add that this little
stroller that she needs consists of an
umbrella stroller frame, foot rests, a
reclining seat, and an abductor to go
between her legs so that she doesn't
slide out, and it costs nearly $2000!! So,
insurance paying for it really is the only option we have right now.
September 3, 2002 12:28pmRick came today to adjust Amber's wheelchair and stander. He had to move her stander up about 3 inches because she's gotten so tall! I asked him if he would order her a handicapped stroller while he was here, and he did. The price came up to $2000!
He plans to run it through the insurance
and see if they will pay for it. If they
won't, he will give us a 15% discount,
which still makes it WAY too expensive,
but I plan to ask people in the family
if they can help. I hate to think of
doing that, but if that's the only way
that we can get it (assuming they will
help us) then, that's what I'm going to
have to do.
Anyway, today Amber is sick with a cold, poor thing. I gave her Tylenol cold and while Rick was here, she kept falling asleep in her wheelchair. I hope that Jacob doesn't get a cold too! That's never fun when they both are sick! Oh, I almost forgot! Last week, I took Amber and Jacob for their 4-year and 2-year check ups. Amber was 33lbs and 41" and Jacob was 34lbs and 38" (so they say); but, I plan to re-measure their height. I have only been to this office one other time, and it was with a woman doctor who I thought was pushy and annoying. She kept hounding me that Jacob couldn't drink more than 4 oz of juice a day and that I really needed to get him the chicken pox and Prevnar vaccines; she just kept pushing it, and pushing it. I was pretty annoyed when I left. I figured I would give the office another chance and just see another doctor the next time. I've been bad about switching pediatricians for little stuff, so I wanted to make sure that I wasn't being unreasonable. Anyway, I got there this time, and Amber had to get her
last three shots
until she is 11 or 12. This doctor looks
at Amber's chart and says' "Oh, she hasn't
gotten the chicken pox or the
Prevnar; she'll get that this time." I
told him that I wasn't going to get it
for her this time, and that I haven't
read enough on it to decide whether or
not that it is something I want to do. He
says, "WHY?" I told him, "Because, I haven't
read enough on it to decide whether
it's something I want to do!!" He says,
"Well, I gave it to my kids 2 weeks
after it came out." I said, "Hmmm, that's
good," and he says "I don't understand why you
don't want to give it to them; it's
required for school!" I told him, "I may home school"
(LOL). He said that in the past
7 years, he hasn't had one person refuse
the chicken pox vaccine. I said, "I
haven't read enough on it to decide
whether it's something I want to
do" (notice I'm getting into a rut here,
LOL?). Then, he says, "Well, you know, you
and I would both feel really bad if you
left here today, and she got chicken pox
and had bad side effects." Boy, I was
ticked now! I told him that I didn't
want the vaccine, and I changed the
subject! Anyway, he's like, "Well, if you
are going to decline this, you are going
to have to sign something saying you
declined this highly recommended
vaccine. Now, it's Jacob's turn. He freaked when I tried putting him on the scale, so it was a good thing I weighed him at home. He wouldn't let the doctor touch him. The doctor would put his stethoscope on Jacob's arm, and he would squeal and wipe off his arm where the stethoscope touched him, LOL. It was too funny! The doctor said, "Well, I see he hasn't had his chicken pox vaccine either." I told him that I didn't want it for him either, and he started telling me that he would just wait on Amber's MMR shot, and we could come back next week and get the chicken pox vaccine when I had had more time to read up on it. I told him "No, give Amber her MMR, and in a month, I'll consider it, and if it's something I want to do, I'll do it then, but not before!!" I'm sure they are getting some kind of money from the pharmaceutical company if they give out a certain number of vaccines. I can't imagine why they would be this pushy, otherwise. They were very, very annoying. If I do decide to get the vaccine, I will not get it there! I don't plan to go back to that office, ever again! September 8, 2002 3:15amI had been taking Amber for water therapy for the past year (since June of 2001) at a senior aquatic center in our city. The only reason we were able to go is because they allow handicapped kids to use the pool for therapy. We are in the city mail route, but not in the city limits (whatever that means), so anyway, we had to pay $60 a year for her to use the pool. Well, during the time I took her, Amber made quite a few "friends!" All the grandmas and grandpas there just think Amber is the greatest thing! Her membership expired in June, and I haven't been able to afford to go get it renewed, so I just haven't been taking her, lately. I think that I could get away with going, with them not asking for our card, but I would be embarrassed if they did, and I didn't have one.Anyway, Chip's grandma goes for water therapy there three times a week and was showing everyone pictures of Amber yesterday afternoon, and one woman that I talked to often asked her where I was. She grabbed Amber's pictures and was showing everyone in the place, LOL. Pretty much everyone knows who we are there, since Amber is pretty much the youngest person there, and everyone always notices how happy she is when she is in the water! Anyway, the lady told Chip's grandma that she hadn't seen me in a while and that I should be taking Amber because she needs that water therapy!! His grandma told her that she thought our membership had expired and that things are pretty tight where money is concerned, lately. The lady said, "Oh, I will give up my membership so that baby can come; as a matter of fact, I will pay to renew her membership!" Chip's grandma was like, "WOW, I don't even know your name and you are offering to do that!!" Chip's grandma told me that she wasn't going to let that lady pay for Amber's membership, and that she wanted to do it! She just wanted to tell me because it was so sweet of that lady to offer! I think I will let her if she wants to. We don't have an extra 60 bucks right now to renew it, and Amber loves it so much, I really would like to take her back some more! September 12, 2002 2:40pmJacob got a big boy bed from his Nana
a few days ago! It is one of those racecar beds, and it's so cute!
He has been sleeping in it the past three nights and has done
very well! I am pleasantly surprised! I got him to take a nap in
it yesterday, and he actually stayed there!! I put a baby gate
on the frame of his door so that we can still close it and when
he opens it, he can't roam around the house at night! That was my
main concern; he can roam around in his bedroom all he wants,
LOL! Last night was the first night he got out of his bed. Chico
(our Chihuahua) barked and woke him up September 12, 2002 6:31pmI went over with Chip's grandma (Grandmommy)
to get Amber's pool pass' and the first thing they say is, "We
aren't issuing passes to non-residents that don't have their old
card to turn in. September 29, 2002 1:30pmI got a letter from the company the other day saying that the total for the stroller was like $2100 dollars, and they would give me a 15% discount because I would be paying cash (ha-ha), and it would bring the total to $1,834. Please send your deposit of $917 and sign this form saying you will pay the rest! Yeah, like who has almost $2000 available for a stroller. I sure don't! I'm not sure what the plan is now. September 29, 2002 1:57pmWe found a nice town home in Cartersville, we plan to move in on October 12! I am SOOOOOO excited! Chip and I have been paying his mom rent and staying with her since we have been married (5 years in November). So this will be our first place of our own! It has no steps, which is one of the main things we were looking for with Amber. Steps would be ok now, but as she gets older and heavier, it will not be an option! It has 3 bedrooms and 2 baths. Amber's bedroom has 20 foot ceilings, mine and Chip's has 14ft ceilings, and Jacob's has regular 8ft ceilings. They are brand new and come will all appliances, including a built in microwave (the only thing it doesn't come with is the washer and dryer). It also has a nice pool with a pool house that they are considering turning into a gym. THAT would be very nice! Oh, we will also have a garage! Margie is giving us her den furniture, a blue sectional couch with end tables and a coffee table! Very nice, and she will be using her living room furniture. My mom is getting a new kitchen set so she is giving me her kitchen table and chairs, so we are set! We still have all of our dishes, silverware, pots and pans and stuff like that from our wedding! I can't wait!! (for the getting in there; I can wait to move everything from this house! It is going to be so hard!). October 6, 2002 1:30pmI got a card in the mail today saying that they just mailed a prescription to Amber's doctor for signature, and that as soon as they get it back, they will contact our insurance company for payment authorization!! I don't think that we ordered anything else besides this stroller!! I plan to call him tomorrow, if I can remember, and ask what it's all about. I hope that we still might be able to get her the stroller. It would be So helpful! October 18, 2002 2:06amWell, we are pretty much moved in. I really like it here so far! The past couple of days have been pretty stressful though. We rented a Ryder truck for a couple of days to move. We rented it Saturday at 8am, and it had to be returned Monday before 7am. We ended up getting it unloaded the second time at 2am Monday morning. There was no way we were going to be able to stay up till 7am and still be able to drive, so we took it back at 4am, and I wrote a note for the people to please call me and tell me the total price because it was coming out of my bank account. Well, I didn't get a call Monday or Tuesday, so Tuesday afternoon, I called and asked them how much it was. The lady said that she couldn't find the close out papers, and she gave me the owner's number at another Ryder place. I called her and told her the situation; she asked me right away, "Are you Jamie Cash?" I said, "Yes." She said, "Oh, well I didn't close it out because there is no truck!" OH MY GOSH!!! I asked her, "What do you mean, there is no truck? I dropped it off at 4am!!!" She said again, "There is no truck!" I told her where we parked it (like it would be real hard for her to miss a 24 foot truck, LOL), and she said there was no truck there, and that she couldn't close it out because she didn't know how many miles we went. I'm like, "Um, hello? There is no truck, and she's just wondering how many miles we went?" Anyway, she said she wasn't worried about the truck, and that it wouldn't come back on us, because they have a tracking device that can find the truck. I sure hope she knows what she is talking about!! She told me that she would call me today to give me the price, and I still haven't gotten a call. I wonder what happened to the truck?! I know we locked it and put the keys in the drop box; and I even went back up to the drop box and made sure there was no way anyone could fish them out!!Then, we got back here and were putting things away, and I walked back through the living room and there was a 2lb box of macaroni scattered all over the place (courtesy of a little blue eyed boy)!! Aggghhhh!!! I cleaned that up and then went to putting stuff away again and went through the living room, again, and there was dry, cat food scattered from one end to the other!! We cleaned that up, and that little blue-eyed boy got a spanking, LOL. Then, I was putting stuff away in a cabinet, and I pushed on it a bit too hard, and it broke a little bit where I have to try and wood glue it back. Hopefully, it will. Then, this morning, I got up and went to my closet to get dressed, and I see permanent marker on the carpet and the walls in my closet. Chip got it cleaned, and then I went in the kitchen and saw a slice in the kitchen floor!! I have NO IDEA how that got there! I am SOOOOO frustrated; I wanted to keep this looking nice. Everything is brand new, and it's getting ruined the first week! Next, we are having to use dial-up for a little while, and my computer, for some stinking reason, will NOT dial up! It always did before so, I'm thinking it may be the modem going bad or something. I am using Chip's old laptop right now (thank goodness that we, at least, have it; it's way better than nothing, LOL!). On the other hand, I really like it here. I love the Cartersville area, and the place is very nice. I love Amber's room too; you lay on her bed, and she has 20 ft ceilings, so it's just cool to look at. Her room looks so cute; I think I want to trade, LOL! November 4, 2002 8:32pmWhere did we get all this junk from?!
There are about 6 boxes left to unpack, and they are just filled
with junk and other good stuff mixed in. I'm totally dreading it!
I still love our new place, but I am going to have to get a job. I've put in my application at a few different places and no
luck! December 7,2002 4:10pmI was giving Jacob a bath two nights ago, and Chip comes running screaming at me "Jamie come here!! Amber's doing that convulsing or something!!" I freaked; she was jerking really hard and was turning blue!! I went to dial 911 because I just didn't know what to do, but decided to first go see if Margie was next door (Chip had lots of febrile seizures when he was young). Amber finally stopped convulsing, and then she went limp as a dish rag and passed out for a few seconds. I went and dialed 911; that was just too freaky! I never saw her do that and Margie never saw Chip do that either. The ambulance came, and they said they thought it was just a febrile seizure, because she felt a little warm. Her temperature was at 102.6 when we got to the hospital, so I'm sure that's what it was. Amber is prone to pneumonia, so we wanted to make sure she didn't have anything like that. We stayed at the hospital for 3-and-a-half hours, and they sent us home saying they didn't know why she had the fever. Margie put her on a prayer list at church last night, and today, maybe, whatever it was, was prayed away LOL! She doesn't act like there was ever anything wrong at all! I'm keeping my eye on her to make sure her fever doesn't come back, but so far, she's just been her normal, happy little self today!I almost forgot about this. Last
week, we went to my Mom's, and Amber was
laying on the floor, and she got up on
her knees, and then lifted her body up
until she was sitting up straight; no
hands; on her knees!!!!!!! I about
flipped; I have never seen her do that,
ever!! She held it for about two seconds
and then did a head dive into the carpet
(ouch!). She didn't cry or anything; she
looked very proud of herself, which she
had every right to!! I haven't seen her
do it again, but we will put pillows
around her the next time for sure!!! December 12, 2002 5:15pmI told Jacob, "Go get me a diaper." Jacob says, "No!" I said "Jacob, GO get a diaper, you're stinky." Jacob says, "I smell like cat box?" Omgosh, I about fell on the floor, lmao! I didn't know he even knew how to associate things like that. Anyway, I just found that funny, LOL! January 2, 2003 3:04amI just really enjoyed watching Jacob open up presents and stuff this year. He is such a little character. He would "ooo" and "ahhh" over each thing before he even got it open, saying, "Oh cool, man" and stuff like that, LOL! He helped open Amber's stuff and "ooo'ed" and "ahhh'ed" over her stuff too, She liked grabbing the tags on clothes and stuff. It was very cute. While we were at my mom's, she would sit without any support, without falling over, for a good 20 seconds or so, which is a big thing for her! We will just have to keep working on it! Margie got them a swing set, and they just love it!! Jacob goes on and on about how he loves his swing, and how he needs to swing, LOL! Amber just giggles and loves to swing too. My mom got Jacob a bike, and he thinks it's neat, but he's not quite tall enough to get on and off by himself, and he's not too sure how to pedal yet either. He will love to have the bike once he gets the hang of it! February 1, 2003 12:11amI decided, on impulse, to visit a new pediatrician's office near my house, because Amber needed a prescription for therapy and needed a doctor up here to give it to her. I went in and asked if they accepted our insurance, and they said no, but they would call me if they decided to. While he (the doctor) was writing my name down, he asked about the kids. I told him about Amber and told him I was looking for a doctor to give us a prescription. He said, "Look, call Monday, and I will see her, no charge." I said, "I have her in the car." He told me to bring her in. So, I did, and he examined her and gave me the prescription. He was very good with her and held her and talked to her. When he put her down, he started asking me more about her, and then he said that with kids like her, they usually don't have as long of life expectancy as other people, and as she gets older, she probably won't get better from all this - that she will make progress in some areas, but she'll probably always have problems. He was nice about it all, but it was like a punch in the gut! I felt like breaking into tears, which is how I feel right now just typing it all out.
This guy was just giving me what he's
seen with other kids, but it is just hard
hearing it so bluntly. I think that he
was trying to see if I had my hopes up
that everything was going to just "go
away and get better," but I think that he
could have said it in a better way. I
believe that only God knows how Amber
will do in the future, and I just hope
and pray for the best for her. I told
Margie about this, and she said maybe
Amber's role in life is to show this guy
a miracle! That would be really nice!
Anyway, although I was a bit offended by
this doctor's bluntness, I think he's
probably a good doctor, and he was very
nice to see Amber at no charge. As we
were leaving, he told me that he would
start accepting our insurance just for
Amber. It was very nice of him to do. I
think that I will give his office a
chance. February 15, 2003 1:35amFor Valentine's
Day, Chip and I went out to eat and to a comedy club and saw Pablo
Fransisco. We
had such a GREAT time!! I cant remember the last time I laughed
so hard, except maybe the last time we went to that club and saw
Larry, the Cable guy, LOL! It was great! I'd love to go more often,
and we would, if it wasn't so expensive! March 7, 2003 2:22amJacob is getting a little smart mouth these days! I am amazed at how brave he is telling me "No!", LOL! Tonight, I was reading to him, and he decided he needed to sit up and read. I told him no, he needed to lay down. He told me no, that he was going to sit. I told him fine, then no more reading. He said, "Fine!" I gave him another chance and told him that If he didn't lay down by the count of three, that I was going to leave, and he wasn't going to get read to anymore. I counted to three, and he didn't lay down; he just sat there with his little arms crossed. So I said, "Ok Jacob, fine; you don't get read to," and I got up, picked up our cats, Lily and Daisy, and threw them out and put away his books. When he realized that I was serious, he lays down and say, "Puh pease, read a book, I wanna read." I told him no, he had his chance. He just started bawling, he cried and called my name at least 50 times before he finally went to sleep. It is really hard not to give in to him, but he has to learn that there are consequences to his actions. I really don't think he understands that very well, yet.Oh, we got a letter yesterday from Aetna saying that they ARE going to pay for Amber's stroller after all, and I was so glad I forced that lady to submit it to them! She was absolutely certain that they would say no! I'm so excited! They put the order through on Feb 26th, so I'm not sure how long it will take to get to us! We will see! March 26, 2003Amber finally gets her stroller. Margie went and picked it up for her today. It's great! (it's not worth 2 grand, but it's great, LOL! She sits so well in it! What a weight off my shoulders for us to finally get it! I kept thinking that something was going to mess it up, where we wouldn't be able to get it! I'm so happy! April 24, 2003 4:33pmChip is the most obsessive wheel
person; he likes our wheels on our car to be clean. Anyway, I
smelled Windex coming from our bedroom. I figured Jacob must
be in the Windex AGAIN! (he likes to help clean) I went in there
and asked him where the Windex was; he says, "On the bed; look,
I cleaned the wheels!" And, he had all his little cars lined up
on the bed; he had cleaned just the wheels on all his little
cars! April 28, 2003 11:04amI went to visit with and go shopping
with my mom, and she got the kids 2 outfits each and a few little
toys. Their new house looks great, and it smells so good! I'm
used to going in their house, and it smells like smoke. They said
they weren't going to smoke in this house and so far, so good! We
were able to stick to our Atkin's diet. I'm surprised because my mom
makes such good stuff. I was afraid I couldn't resist if she made
enchiladas or lasagna or something yummy like that! She decided
to just make stuff we could eat, so we weren't tempted, LOL! She
gave me 4 pieces off of her plants, so now I have 4 more plants!
When I got home, I went outside to see my other plants, to make
sure they hadn't gotten knocked over or anything, and on 3 of
them, the leaves were burned; apparently, they can't have any
direct sunlight.
May 1, 2003 11:44amI keep getting people telling me that I should put Amber in school. Her therapist just left a few minutes ago, and she told me that the special ed program in this area is excellent! She said that she thinks that Amber understands a lot, maybe not on a 5 year old level, but she thinks she understands much more than we give her credit for, and she thinks that Amber would really benefit from being around the other kids and getting all three therapies.It scares the crap out of me thinking
about sending her off with people that I
don't know! I want what is best for her,
but I don't want to send her off with
some freak pervert! I think that I could
go sit with her for a period of time,
and I think that they have cameras in
the room, but what about when they leave
the room? Amber can't tell me what goes
on; she can't tell me if someone was
mean to her or touched her where they shouldn't have! May 5, 2003 8:12pmWe are flat broke and need to make the diapers between Amber and Jacob stretch till Friday, so I told Jacob that the diapers were all gone, and he had to start wearing underwear. I was so shocked, he accepted it! Normally, when I put him in underwear, he cries that he needs a diaper. He asked me if Daddy could go get some diapers, and I told him no, we didn't have enough money, and he is just going to have to wear underwear, and he just accepted it! I am just stunned!!! I wish I would have thought of this all along, LOL! He would squirt a little bit in his pants, enough to need to be changed, then he would go in the bathroom and pee the rest in the toilet. The longer he lasted today, the better he got at going when he needed to without an accident. Margie took us out to eat for "Cinco de Mayo" at a Mexican restaurant, and we bravely took him in his underwear. Before we left, I took his little seat that I put on the toilet, and he went! He kept begging me not to flush the toilet because it was scary, so we didn't, LOL! I hope this goes well, and we don't have to go back to diapers! May 6, 2003 1:14pmWe have been under a tornado warning since noon, and I've been so nervous! Our back yard is a lake, we've gotten so much rain! We are around mountains. I thought we weren't supposed to have tornados here, LOL! I've been praying that the tornado wouldn't hit us, and it, thankfully, didn't. I think that we are supposed to have other storms later tonight, but as long as they don't turn into tornados, I can deal with that! I had Amber, Jacob and both of our cats in Jacob's room for a while. His is the only room with no windows, and we don't have a basement here.Jacob is doing pretty good wearing
underwear! He has told me every time he
needs to go today. He still hasn't gone
to poop since yesterday morning, and I'm
wondering if he's holding it, or
something, cause he's afraid to go in the
toilet! Normally, he's like clockwork; I can almost predict when he will need a
diaper change. I guess we will see; I am
hoping he will go in the toilet, but I'm
preparing myself to change poopy
underwear, just in case
May 12, 2003 8:30pmJacob finally went poop in the potty! I'm guessing it was a fluke, but I made such a huge deal over how proud I was of him, that I hope that he will continue to do it. We'll see.We went and got Amber's AFO (ankle-foot orthosis) braces today. They are dark purple - the guy told me lavender - that's the last time that I just takes someone's word for what color something is, LOL! Oh well, they are the same purple as her stroller, so she will match when we go somewhere. She isn't too annoyed with them, so far. Her therapist will be thrilled! Oh, I took her to the school and talked with the teachers for around 30 minutes, and I'm thinking about enrolling her next year. They were very nice, and they will let me sit in the classes as often as I want to. We will see how it goes as the time gets closer. June 1, 2003 12:14amI wrote on a neurology forum a year ago about Amber not having a diagnosis. I went back and saw that I got a few responses that I missed. One of the ladies asked me to write her because she wanted to ask me something. I did (a year later!) write her, and she re-read the post and asked me if Amber had been tested for Angelman Syndrome. I thought, yes, I think she has. I went through her medical records and found out that NO she hasn't! I read up on this, and I'm just floored! Amber has almost every symptom out there! Just about every one! I read these stories about these Angelman Syndrome kids, and it sounds like I wrote it about Amber. The only thing that we haven't dealt with is the seizures, and they say that not all the kids have seizures. I'm just so freaked out! I have been searching and searching for nearly 4-and-a-half years and have never found anything that sounded so much like her. I am so excited; I don't want her to have this but, I'm excited that I might have found what she has! I hope that I don't have any problems with the neurologists listening to me about this. I can't believe that she hasn't been tested for this, or that it hasn't been suggested. I was talking to her therapist about this, and her therapist said that she reminded her of another girl that she works with that has A.S. I want to go have her tested right away. The results take about a month to come back, so it'll be a while before we know. I hope I can get an appointment in to see the neurologist right away. June 2, 2003 10:00amI can hardly stand the stress of
wondering if the doctors are going to take me seriously, or if
they will even do the tests, or if they even know what tests to
do (apparently this syndrome is not well known!)! Amber has 3
different neurologists; two I thought I would never go back to,
but I am going to go to them if they can get me in sooner than
the one that she goes to now, which is very, very likely since
his first available appointment is January 13 of NEXT YEAR! June 8, 2003 11:50amI got brave yesterday and let chip cut my hair. He did a pretty good job. I feel so much better than before. He cut it a little shorter than I wanted, but it looks ok. I am down 20lbs so far on the Atkins diet, and Chip is down 25lbs. I still have a long way to go, but I feel like I look a lot better already! June 12, 2003 3:29pmThe appointment went SOOOOOOO well!!! I was
so nervous all day yesterday and this morning about if this
doctor was
going to blow me off! The last time I saw him, he was insisting
that she had cerebral palsy. I got there, and I told him that I
have done a lot of research on Angelman Syndrome, and I've met
someone who's kid has A.S., and it sounds JUST like Amber!
He looked back at his notes and said that at the last appointment, he
had written down to do a 15q something-or-other test on her, which
is the Angelman test! We went and did the test today, and we will
get the results in a few weeks!!!! I'm so thrilled that we got
this done! He had some other tests in mind for her too that she
hasn't had. I have to go transfer her records back to his
office. He seemed to listen to me this time and actually acted
like he gave a crap. The last few times I went, I didn't want to
go back. I could have kissed him when he told me that he agreed
that she should be tested for this! June 23 3:18pm
July 3, 2003 1:54pmThe results were normal on both tests
Amber had. I suppose I should be glad that everything is
coming out normal, but I cant help but to be disappointed a
little because there is obviously SOMETHING! There is one other
test for Angelman Syndrome, but those kids that have this type
are usually very much higher functioning than Amber is. I
think I'm going to see if he can do it, regardless. I'm not sure
what direction we should go now if this is not it. I would have
bet money that this is what she has; she just has SOOOOO many
of the symptoms it's unreal! It's not that I wanted her to have
this; I just want to know what to call it; I want someone that
can identify with me; without a diagnosis, I don't have that.
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My
name is Jamie, my husband's name is Chip. We live in Smyrna,
Georgia. We have 2 kids: Amber who will be four on Aug 5, and
Jacob who turned two on June 23. Amber is severely,
developmentally delayed which is the reason I have this in the
parenting special needs category. I never really even thought
about having a journal, I'm going to give it a try and see how
it goes.
Amber was born August 5, 1998. I had a
very normal pregnancy, no complications
at all. After 5 hours of labor Amber was
born. I noticed that her eyes kept
rolling back and it freaked me out a
bit. I kept asking if they had ever seen
a baby do that, and if they thought that
it was normal? They told me that they
had seen it, and her eyes were just
adjusting to being outside of me. I
still thought it was odd, because I had
never seen it myself, but I accepted
their answer for the moment. 
We took Amber home, and we noticed
that she would spit up after everything
she ate. I took her in to the doctor, and
I was told that I was feeding her too
much at one time, and that I needed to
cut down on the amount I gave her. Three
months later, I told them that it just
wasn't "normal" at all, and we took her in
for a Birbilion Swallow Test, and it showed
that she had gastro-esophageal reflux,
and she was put on a prescription that
was supposed to help. It didn't help, and
she ended up having the reflux episodes
often, up until she was around 3; and she
occasionally still throws stuff up; not
very often, but sometimes. They say most
babies get over reflux when they start
sitting up and walking; she still is not
walking so that is why it took so long
to get over it. 
I found out at her
one month checkup that she had a Heart murmur, I took
her to a pediatric cardiologist, and he
said that he thought that it was
"innocent," but to come back when she
turned 2 to make sure. If it wasn't, they
said that she would have to have surgery
to correct it. A little while after her
second birthday, we went back, and she
still has the murmur; but it is
definitely an innocent murmur. He said
that she shouldn't have to see him again,
ever. 
Her first appointment with the
ophthalmologist was on November 19 when
Amber was about 3-and-a-half months old.
The ophthalmologist did a few "tests"
looking at her, and she told me that she
believed that Amber had vision in the
20/400-20/600 range (blind), and that
since she has this so young that there
was a 99.9 chance that nothing could be
done because the problem was most likely
coming from the cortical region of her
brain, rather from her eyes themselves.
OH MY GOSH, I couldn't believe it! All I
could think of is all the things that
she would never get to do! How, when she
turned 16, I wouldn't be able to go down
and get her driver's license. I thought
about guide dogs, white canes, learning
Braille, everything! I was totally
shocked that the stuff I was worried
about was so real and was happening to
us. I also was extremely ticked
off at the doctor that told me that she was
fine, and that she would just outgrow her
eyes doing that. He made me feel like I
was dumb to even have concerns about her
eyes. Needless to say, we switched
doctors ASAP!
Amber's eyes started crossing, and it
looked really bad, and she could have
totally lost all use of her "wandering"
eye. So, we decided to get surgery to
straighten her eyes at 13 months old.
Her doctor said that it most likely
would not help her see any better, but it
would make her look a lot better, so
she wont get teased about her eyes. The
surgery was a huge success, and today, you
would never believe that she didn't
track things until she was about 18
months old; and even then, she didn't
track them well. She didn't even smile a
"real" smile until she was over a year
old, and we didn't hear her laugh until
she was over a year either. Her vision
is very good now; her doctor still cannot measure her vision, since she is
unable to talk, but she was shocked at
how well Amber watches you, follows
things, etc.
Her pediatrician said that it was very
unusual for a baby her age to get a u.t.i.,
so he decided to order a few tests: a
VCUG and a sonogram of her kidneys. The
results were that she has grade-two
reflux in both kidneys, and that she will
have to be on antibiotics for a long
time to prevent future u.t.i.s. I took her
to a pediatric urologist, and he said
that she actually had grade-one in her
left kidney and, just barely, grade-two
on
the right. We were told to keep her on
a low dose antibiotic and come back in a
year. He said that with that low of a
grade, it usually corrected itself, but
if it didn't, it would require surgery. I
was just amazed that a baby so young, not even 6-months-old, could have
SO MANY PROBLEMS!! It was just unreal! I
ended up giving her the antibiotic for
about a month or two, and then I stopped.
I took her in a year later and the
reflux had corrected it's self! Another
answer to our prayers! 
On January 29, 1999, we took Amber back
to the neurologist that she saw in the
hospital, and he requested to see her again
a month later. He said that he was
pleased with her progress from when he
saw her in the hospital (she was holding
her head better and not quite as floppy).
He recommended we start therapy to get
her to bear weight on her legs and
strengthen her neck. So. that's what we
did. 
She was finally evaluated by the
State of Georgia's early intervention
program, which I would NEVER have done
if I had realized that my
insurance covered it.
They are the most
annoying people, insisting that they
know every detail of our lives and
report to them anytime Amber did
anything, and I had to borrow Margie's
car to go to meetings that had no point!
I just hated it. They wanted to "HMO
manage" Amber's therapy, and it just
sucked that I didn't realize my insurance
was footing the entire bill, including
their ridiculous home visits and
meetings, until much later; and I broke
all contact with those people. Anyway,
at 7 months old, Amber's developmental
skills all seemed to fall at about the
level of a
2-or-3-month-old. At 10 months, she was
evaluated by a developmental
pediatrician and was on about a 4-month-old-level
on most things. She had blood
tests, urine tests, and head scans,
which all
came back normal. The neurologist was
totally puzzled as to what was wrong
with her. 
When she was 17 months, we took her to
a geneticist and had genetic testing
done. The results came back normal, of
course. I was pregnant with my son at
the time, and the geneticist said that
she didn't need to see Amber again
unless the baby that I was pregnant with had
something wrong with him when he was
born (let me tell you, that is not a
good thing to say to the pregnant mother
of a a handicapped child who already is
worried sick!). I wouldn't have gone back
to her even if there was something wrong
with my son, which there isn't. I
would have found another
geneticist, one that had a little
sensitivity!
That way you cant sue us if something
happens!" Yeah ok, like I'm going to sue
them ...whatever!
I heard his door open and saw him standing there with his "mankie"
(his blankie) saying "All done!! Full! Mama, Daddy, full get out, all done, help you, full!"
LOL, it was too cute. I put him
back in bed and didn't hear another peep out of him for the rest
of the night! Chip's grandma said that she was going to renew
Amber's swimming pass; I just have to find her old one so that
we don't have to get another "prescription" from a doctor for
water therapy! It's such a pain in the butt to get anyone to do
anything, lately!
They say this went into effect 8-23. Well Chip's grandpa went and
got his pass renewed 9-3, and he didn't have his old card. I
misplaced Amber's, so I asked them if they could make an exception
because she REALLY needed water therapy. The lady says she can't
do anything, and that I'd have to talk to the director. I was thinking
"Oh lovely! Her husband is the mayor of the city so she
thinks she's almighty powerful!" So anyway, she comes out and
says, "Well, that's our policy." I tell her that Chip's grandpa got
his pass and would they please make an exception for Amber too.
She says well, I guess this time we can, but next time you will
have to have your pass. I told her that I would be moving, so we
wouldn't have to worry about it (nicely, not snotty or
anything). Well, we were standing there and she says, "You know,
she is only allowed to go to the pool on Saturday." I asked, "Why?" She
said, "Well, all the old people are set in their ways and don't
like change, blah blah blah." I told her that all the old people
there LOVE Amber, and they all have been asking where I've been.
And that I even had a lady offer to pay for Amber's renewal!! She
says, "Well, WE request that she only come Saturdays." I'm like,
***! I pay $60 for her to come to a pool for therapy she needs
at LEAST twice a week, and she says I can only go on Saturdays?
Whatever!! I told her that I never had a problem with anyone, and
I've even had them tell me to join in their classes when I was
waiting for open swim!! And, most Saturdays, I don't even have a
way to get over to the pool. She repeated herself over and over
that Amber could come just on Saturday (I don't THINK so!). Finally, I
told Grandmommy, "Look, just don't worry about it; I'm not going to
pay for her stupid rules, and I looked at the director and
told her that I hoped she was happy!!!" I cant believe someone
would be such an insensitive ***** as to try and take away one
of the very few things that a handicapped child likes and can
do!! Aggghhhh!!! Well, I went out to the car, and Grandmommy stayed in
there; she ended up paying for Amber's pass anyway. I'm not
going just on Saturdays like "the witch" requests; she doesn't know
what goes on down there; she just likes to feel powerful! I
really, really don't like her, LOL. Anyway, I am happy that Amber
can go again; she just loves it SO much!
He also had about half a bottle of Windex spilled on our
comforter and sheets! 
Thank goodness for the waterproof cover we have over our
mattress!
I will be posting the results of this test as soon as I get
them!
