Wow! This has been a year and we still have another month to go! I woke up this morning feeling overwhelmingly grateful. We have so much to be thankful for!
A friend sent me this poem today and I wanted to share it with you. It so describes my heart for all of you. So many of you I've never met, but you have become dear friends nonetheless. Thank you for all your support and Prayers. I hate to imagine our lives without each of you!
A poem by Peggie Oefelein
You have seen us struggle, you have seen us shine,
You have joined my family and become a friend of mine.
You do not judge, you do not waiver
You held us up, you are a life saver.
Thanking God seems so simple and so not enough,
for the people who have made me so tough.
You have taught me to laugh when life is not good,
You have held my hand to do what I should.
I am a better person because of you,
I know that because all you do.
Thank you for being my friend,
I know you will be there until end.
Thursday, November 27, 2008
Wednesday, November 26, 2008
Javan's Service Dog....
Javan is the grandson to a dear friend I met through 4paws. They live in Hurst Texas and he is in the December Training class. He will meet his dog on Tuesday, Dec. 2nd! We're so excited for Javan! This is the letter from his dog and her picture.
Hello! my name is Mesa and I am a Goldendoodle. I am a member of the national Parks gang born to Allie and Hobo. My birthday is 11-9-2007 and I am a girl dog. I hope you do not mind and I sure hope you are not one of those boys who runs around saying girls have kooties! I am so excited you are coming. I heard you visited us and were actually in the same building with me. WOW you know what I think I felt you here! I was just sitting there in my crate and bam you came into my head and I was thinking it was THE Tuesday and you were here to get me. Well,it is only one more week! Next Tuesday it will really be THE day and we will be together! xoxoxoxoxoxoxoxoxoxoxo Mesa
Hello! my name is Mesa and I am a Goldendoodle. I am a member of the national Parks gang born to Allie and Hobo. My birthday is 11-9-2007 and I am a girl dog. I hope you do not mind and I sure hope you are not one of those boys who runs around saying girls have kooties! I am so excited you are coming. I heard you visited us and were actually in the same building with me. WOW you know what I think I felt you here! I was just sitting there in my crate and bam you came into my head and I was thinking it was THE Tuesday and you were here to get me. Well,it is only one more week! Next Tuesday it will really be THE day and we will be together! xoxoxoxoxoxoxoxoxoxoxo Mesa
Monday, November 24, 2008
Dr Visit
After a weekend of illness I took Hannah to the doctor today. She has a bad cold, with sinusitis and bronchitis. She can barely talk. Dr. Beyer put her on an antibiotic and gave her a cough medicine.
I got a call from Scottish Rites today and they are referring Hannah to Children's Medical Center for a intense rehabilition program to treat her hypotonia. The program involves botox injections so I have something else to learn about. I'm not going to attempt getting her in until after the New Year. We just have too much happening right now.
Next week I will be attending the Autism conference in Arlington. I'm so excited to get to go. I've heard wonderful things about it and look forward to the information I should get from the experience.
Please keep praying for Hannah. I did complete her video and my friend Vicki hand delivered it to 4paws today! She is there with her grandson to get his service dog. I cant' wait to hear about their experience and meet their dog!
Got to get this girl to bed!
I got a call from Scottish Rites today and they are referring Hannah to Children's Medical Center for a intense rehabilition program to treat her hypotonia. The program involves botox injections so I have something else to learn about. I'm not going to attempt getting her in until after the New Year. We just have too much happening right now.
Next week I will be attending the Autism conference in Arlington. I'm so excited to get to go. I've heard wonderful things about it and look forward to the information I should get from the experience.
Please keep praying for Hannah. I did complete her video and my friend Vicki hand delivered it to 4paws today! She is there with her grandson to get his service dog. I cant' wait to hear about their experience and meet their dog!
Got to get this girl to bed!
Saturday, November 22, 2008
Cold & Fever
Hannah has a bad cold and is now running fever. Please pray for her. Fever is the main trigger to her status seizures.
Sunday, November 16, 2008
This Girl is a Mess!!!!
It's one extreme or the other around here these days. Hannah just loves to aggravate lately. She's gotten really mischievous. Yesterday we spent all day making her put the cushions back on the couch that she had taken off a million times. Today she's been in Zachary's birthday cake several times. She's getting into everything. I think we're going through the terrible twos at age 7.
There have been few meltdowns the last few days which is really a relief. We're still on the same meds. I've added giving her a 100 mg's of vitamin 6 and it may be helping a bit. We'll have to wait and see I guess.
At any rate I'll take those aggravating, mischievous days over those days in the hospital anytime. In reality they can be really fun. Sometimes I just have to adjust my attitude at the moment. LOL!
Oh, and yesterday I was so excited! Hannah and I were playing around on the computer when she started pushing each key and telling me the name of the letter. She knows them all. I knew she did but sometimes it's hard to know for sure because she just lacks the ability to communicate what she knows. It was an encouraging development though and let me know that the work we're doing with her is getting through.
On Friday we went to the lab and had Hannah's lab drawn for the SCN1A mutation testing. Really we're sure she has it. It's complicated. Most neuros treat epilepsy as a whole and do not think in terms of syndromes when treating it. So, basically it's been up to me to get our neuro the information about this syndrome and how it needs to be treated. Thank God for The Idea League and Dr. Angela Black who are helping me with that. The geneticist we saw felt Hannah definitely had DRAVET and Hannah fits all the criteria for determining it. Even if the test comes back negative for the mutation it doesn't mean she doesn't have it. We'll have to go to a specialist which we have to do anyway and they will make the final determination. As weird as it sounds I hope the test shows us something. As awful as DRAVET is, it will be nice to know what we're dealing with and can focus on treating it particularly. So, I should have the results in 4 to 6 weeks.
I still have tons to do and a little over 3 months to get it done in. I've about put the finishing touches on the final video to send to 4paws. I've filled out the dog match form and sent it to them. I still have to buy a few dog supplies but think I will wait until we see which dog she gets. Also, I've got to finish raising our funds for travel. We're also going to make a move to a larger, better house before the end of the year.
It's hard to believe the holiday's are around the corner. I know the Chapman's will be extra thankful this year for God's blessings in our lives. We are so blessed and we know we are! We live with a constant reminder of how good God is. Every smile, giggle, run, skip, and song we are reminded of the miracle we have among us. God is Good!
There have been few meltdowns the last few days which is really a relief. We're still on the same meds. I've added giving her a 100 mg's of vitamin 6 and it may be helping a bit. We'll have to wait and see I guess.
At any rate I'll take those aggravating, mischievous days over those days in the hospital anytime. In reality they can be really fun. Sometimes I just have to adjust my attitude at the moment. LOL!
Oh, and yesterday I was so excited! Hannah and I were playing around on the computer when she started pushing each key and telling me the name of the letter. She knows them all. I knew she did but sometimes it's hard to know for sure because she just lacks the ability to communicate what she knows. It was an encouraging development though and let me know that the work we're doing with her is getting through.
On Friday we went to the lab and had Hannah's lab drawn for the SCN1A mutation testing. Really we're sure she has it. It's complicated. Most neuros treat epilepsy as a whole and do not think in terms of syndromes when treating it. So, basically it's been up to me to get our neuro the information about this syndrome and how it needs to be treated. Thank God for The Idea League and Dr. Angela Black who are helping me with that. The geneticist we saw felt Hannah definitely had DRAVET and Hannah fits all the criteria for determining it. Even if the test comes back negative for the mutation it doesn't mean she doesn't have it. We'll have to go to a specialist which we have to do anyway and they will make the final determination. As weird as it sounds I hope the test shows us something. As awful as DRAVET is, it will be nice to know what we're dealing with and can focus on treating it particularly. So, I should have the results in 4 to 6 weeks.
I still have tons to do and a little over 3 months to get it done in. I've about put the finishing touches on the final video to send to 4paws. I've filled out the dog match form and sent it to them. I still have to buy a few dog supplies but think I will wait until we see which dog she gets. Also, I've got to finish raising our funds for travel. We're also going to make a move to a larger, better house before the end of the year.
It's hard to believe the holiday's are around the corner. I know the Chapman's will be extra thankful this year for God's blessings in our lives. We are so blessed and we know we are! We live with a constant reminder of how good God is. Every smile, giggle, run, skip, and song we are reminded of the miracle we have among us. God is Good!
Sunday, November 9, 2008
Insanity....
Please pray for mine. I'm going to call the neuro first thing in the morning. I want Hannah off lamictal and Keppra. I KNOW topomax works and she didn't cry all the time when she was on it. I want to at least see if it causes her to cognitive slow down. If it does, then I'll ask for something else. She can't live like this! I won't let her. We've had 5 days out of 7 of meltdowns where she just cries for hours and hours. I've tried giving her B6 to counter the side effects of keppra but it's just not working. Please pray for her. She keeps telling me she's sorry and I keep telling her it's o.k. but she just keeps crying. I think she knows she shouldn't be crying but just can't help it. I don't know. (((sigh))) We need your prayers!
Thursday, November 6, 2008
Hillsboro Elmentary is the Best!
I met with Mrs. Duncan, Mrs. Sellers, and Mrs. Mobley this morning and I left feeling really good about things. I was embarassed about my meltdown last week but they were so understanding and willing to work with me. This was a great start to my 38th birthday! I pray it ends on this good a note! LOL!
Saturday, November 1, 2008
Honestly....This week has been the worst one I've had in a while....
This was the worst week I've had in a very long time and I'm so glad it's over!
On Monday we saw the geneticist and she informed me that in her opinion Hannah does have DRAVET but that the genetic test we needed to help us see if she is more than clinical for it, would not be covered by our insurance. The test was $4400 out of pocket. She then felt Hannah had extreme hypotonia in her hands and ankles. I came home frustrated. Contacted my Idea League parent sponsor and an md on the board and she went to work to help me get what we needed. So, once again I'm advocating for my daughter and getting her what she needs. This stuff is alot of work. I also contacted Dr. Beyer (Hannah's pedi) and she is sending me paperwork to get Hannah evaluated at Scottish Rites. Then we got new neighbors and they asked if they could cut down a dead tree in our front yard. They said they wouldn't charge us, they just liked to cut down trees.
On Tuesday I take Hannah to school and we find out that one of custodians passed away the day before on the school campus. Bless his heart. He was a very nice man. I ran into Mrs. Divin and we had a chat about how I really like Mrs. Mobley(Hannah's teacher) and am so glad they moved her to this school. We talked about Kyle and his college, Zachary and how he's liking Highschool and of course Hannah and how she's a hero. I get home and the city is in front of my house telling me that they will not pick up the limbs the guy cut down because they are too big and that I'll have to cut them down more and it will still cost me $65 for them to pick it up. LOVELY! I have plenty of time to cut limbs and I just love throwing $65 more dollars to the city. Ugggh! So, I went to work trying to figure out what to do. Then a woman from DADS came to the house to do an assessment on Billie to see if we can get her some assistance with baths, etc.
Wednesday I had a gastro appointment that I canceled. The day wasn't too bad but then that evening I gave Hannah her bath and washed her hair. Her hair has been a mess y'all since July. I would just about get it all worked out and she'd go into the hospital again and have another 24 hour EEG and it would be a mess again. Well, three of those incidences had her hair in mats at the scalp. I've been steadily working on them and working on them. Wednesday night I just couldn't get them out. I worked them towards the ends with her screaming, "Please! Jesus! Please!" I was so upset. I had to cut them out so I cut about 6 inches off her hair. The comb went right through after that. That baby had been through enough torment and I wasn't going to torment her another minute over some hair! It just wasn't right. In between all that my neighbor kept ringing my doorbell to ask me if they could finish the job with the limbs and I just pay them instead of having to pay the city. That they needed the money bad. So, I agreed to just let them do it and get it over with.
Thursday was the worst day. I was in Wal-mart when I saw another parent. Not a parent that I speak with or even know. Just one I've seen. I nodded at her in passing when she stopped and asked me what I was going to do about the school district not letting Hannah's dog come to school with her. I told her I didnt' knwo that they weren't. Basically she went on telling me a bunch of stuff that really upset me. Things like people think I'm overprotective and that Hannah doesn't need the dog. Then I was in line at the school to pick up when I found out I had been breaking rules by posting pictures of Hannah that had other school children in them. Not a big deal because I didn't know. I just took those ones off. Then I got home and I had a letter basically threatening me with truancy over Hannah's absenses. I know they are only doing what they are required by law to do but it's just unnerving. There has to be some kind of exception to the rule. Ugggh! So, I emailed the assistant principal and asked if I could just trash the letters or does she need me to go through the whole process of sitting in her office explaining why Hannah was out so much even though they have a note on file. I then emailed Hannah's teacher and had a breakdown telling her how stupid I had been to brag on this school district, etc. I cried all afternoon and into the night. It became glaringly obvious that I had been the victim of ignorance. There had been no talk among administration and faulty that I was overprotective and that Hannah didn't need her dog after speaking with Hannah's teacher more. How can a parent kick another parent like that when they are down. Surely to God in heaven they aren't "jealous" of Hannah getting a service dog! I just don't think people get it. Hannah almost died three times in less than three months! I'm talking she was dying. If it weren't for life support, emergency seizure meds, and a miracle she wouldn't even be here for us to worry about whether I'm overprotective or she needs her dog. I guess unless you experience it yourself you can't even understand. I know that I'd never do that to another person though and it's hard for me to understand anyone else doing it. Even if I had heard such talk I'd have never told the person because I'd assume with all they'd been through they didn't need to hear that mess. Uggggh! I'm rambling. I feel like I'm back in Junior high with this crap!
On Friday I got a call from the lab that we had been working with about the testing needed and the rep went to work for me. By that afternoon she called me to inform me that she was able to get Hannah's testing at 100% covered. They are sending me the kit to go have the lab drawn and then I am to mail it to them. Not the lab. I also got a call from the assistant principal and will meet with her and Mrs. Duncan on next Thursday morning. She was kind when she made the date. I'm pretty embarassed for not keeping myself in check and having an emotional breakdown over the whole overprotective Hannah doesn't need that dog thing. It's just that the woman knew alot of specific information and she I was upset that there was concerns but no one had said anything to me about it. (((sigh))) I thought our luck may have changed. Everything seemed to be going alright when I was combing Hannah's hair and decided to french braid it. I got towards then end and found a big bald spot. I have no idea what it is from. From her meds? From all the meds at the hospital? From the EEG's? I just dont' know. It was pretty much a breaking point for me.
I'm scared. I won't lie. I'm actually very scared. I'm tired. I'm frustrated. I'm a number of things. This is hard stuff. The liklihood that Hannah could die in one of her seizure episodes has increased. It's a very real chance. When I drop her off at school in the morning the chance that she will be gone before I see her again is there. I know it's there for everyone, but it's really there for me. That being said I want her to enjoy her life to the fullest of her ability. I want to do everything I can to help her be safe, but I do not want to hinder her living this life and loving it to the fullest. Believe me when I say that's a hard task for this mom.
Please pray that next week is smoother than this week. I have a very busy one. Billie and I both have doctors appt's on Monday. Billie has one on Tuesday plus it's election day. Then Wednesday I have an appt. in Arlington. Then Thursday is my birthday (Whooooopeee! LOL!) The big 38. (blech) and I have a meeting with the principal and assistant principal. So far Friday is open, but I bet it won't be by the time it gets here. LOL!
I appreciate all your prayers. Please pray for my sanity. I have 4 months until we go get the dog and alot to accomplish in those four months. Plus, the holiday's, finding a house and trying to move, and just a bunch of stuff. My head hurts just thinking about. Thank you for all your support. We'd never make it without y'all!
On Monday we saw the geneticist and she informed me that in her opinion Hannah does have DRAVET but that the genetic test we needed to help us see if she is more than clinical for it, would not be covered by our insurance. The test was $4400 out of pocket. She then felt Hannah had extreme hypotonia in her hands and ankles. I came home frustrated. Contacted my Idea League parent sponsor and an md on the board and she went to work to help me get what we needed. So, once again I'm advocating for my daughter and getting her what she needs. This stuff is alot of work. I also contacted Dr. Beyer (Hannah's pedi) and she is sending me paperwork to get Hannah evaluated at Scottish Rites. Then we got new neighbors and they asked if they could cut down a dead tree in our front yard. They said they wouldn't charge us, they just liked to cut down trees.
On Tuesday I take Hannah to school and we find out that one of custodians passed away the day before on the school campus. Bless his heart. He was a very nice man. I ran into Mrs. Divin and we had a chat about how I really like Mrs. Mobley(Hannah's teacher) and am so glad they moved her to this school. We talked about Kyle and his college, Zachary and how he's liking Highschool and of course Hannah and how she's a hero. I get home and the city is in front of my house telling me that they will not pick up the limbs the guy cut down because they are too big and that I'll have to cut them down more and it will still cost me $65 for them to pick it up. LOVELY! I have plenty of time to cut limbs and I just love throwing $65 more dollars to the city. Ugggh! So, I went to work trying to figure out what to do. Then a woman from DADS came to the house to do an assessment on Billie to see if we can get her some assistance with baths, etc.
Wednesday I had a gastro appointment that I canceled. The day wasn't too bad but then that evening I gave Hannah her bath and washed her hair. Her hair has been a mess y'all since July. I would just about get it all worked out and she'd go into the hospital again and have another 24 hour EEG and it would be a mess again. Well, three of those incidences had her hair in mats at the scalp. I've been steadily working on them and working on them. Wednesday night I just couldn't get them out. I worked them towards the ends with her screaming, "Please! Jesus! Please!" I was so upset. I had to cut them out so I cut about 6 inches off her hair. The comb went right through after that. That baby had been through enough torment and I wasn't going to torment her another minute over some hair! It just wasn't right. In between all that my neighbor kept ringing my doorbell to ask me if they could finish the job with the limbs and I just pay them instead of having to pay the city. That they needed the money bad. So, I agreed to just let them do it and get it over with.
Thursday was the worst day. I was in Wal-mart when I saw another parent. Not a parent that I speak with or even know. Just one I've seen. I nodded at her in passing when she stopped and asked me what I was going to do about the school district not letting Hannah's dog come to school with her. I told her I didnt' knwo that they weren't. Basically she went on telling me a bunch of stuff that really upset me. Things like people think I'm overprotective and that Hannah doesn't need the dog. Then I was in line at the school to pick up when I found out I had been breaking rules by posting pictures of Hannah that had other school children in them. Not a big deal because I didn't know. I just took those ones off. Then I got home and I had a letter basically threatening me with truancy over Hannah's absenses. I know they are only doing what they are required by law to do but it's just unnerving. There has to be some kind of exception to the rule. Ugggh! So, I emailed the assistant principal and asked if I could just trash the letters or does she need me to go through the whole process of sitting in her office explaining why Hannah was out so much even though they have a note on file. I then emailed Hannah's teacher and had a breakdown telling her how stupid I had been to brag on this school district, etc. I cried all afternoon and into the night. It became glaringly obvious that I had been the victim of ignorance. There had been no talk among administration and faulty that I was overprotective and that Hannah didn't need her dog after speaking with Hannah's teacher more. How can a parent kick another parent like that when they are down. Surely to God in heaven they aren't "jealous" of Hannah getting a service dog! I just don't think people get it. Hannah almost died three times in less than three months! I'm talking she was dying. If it weren't for life support, emergency seizure meds, and a miracle she wouldn't even be here for us to worry about whether I'm overprotective or she needs her dog. I guess unless you experience it yourself you can't even understand. I know that I'd never do that to another person though and it's hard for me to understand anyone else doing it. Even if I had heard such talk I'd have never told the person because I'd assume with all they'd been through they didn't need to hear that mess. Uggggh! I'm rambling. I feel like I'm back in Junior high with this crap!
On Friday I got a call from the lab that we had been working with about the testing needed and the rep went to work for me. By that afternoon she called me to inform me that she was able to get Hannah's testing at 100% covered. They are sending me the kit to go have the lab drawn and then I am to mail it to them. Not the lab. I also got a call from the assistant principal and will meet with her and Mrs. Duncan on next Thursday morning. She was kind when she made the date. I'm pretty embarassed for not keeping myself in check and having an emotional breakdown over the whole overprotective Hannah doesn't need that dog thing. It's just that the woman knew alot of specific information and she I was upset that there was concerns but no one had said anything to me about it. (((sigh))) I thought our luck may have changed. Everything seemed to be going alright when I was combing Hannah's hair and decided to french braid it. I got towards then end and found a big bald spot. I have no idea what it is from. From her meds? From all the meds at the hospital? From the EEG's? I just dont' know. It was pretty much a breaking point for me.
I'm scared. I won't lie. I'm actually very scared. I'm tired. I'm frustrated. I'm a number of things. This is hard stuff. The liklihood that Hannah could die in one of her seizure episodes has increased. It's a very real chance. When I drop her off at school in the morning the chance that she will be gone before I see her again is there. I know it's there for everyone, but it's really there for me. That being said I want her to enjoy her life to the fullest of her ability. I want to do everything I can to help her be safe, but I do not want to hinder her living this life and loving it to the fullest. Believe me when I say that's a hard task for this mom.
Please pray that next week is smoother than this week. I have a very busy one. Billie and I both have doctors appt's on Monday. Billie has one on Tuesday plus it's election day. Then Wednesday I have an appt. in Arlington. Then Thursday is my birthday (Whooooopeee! LOL!) The big 38. (blech) and I have a meeting with the principal and assistant principal. So far Friday is open, but I bet it won't be by the time it gets here. LOL!
I appreciate all your prayers. Please pray for my sanity. I have 4 months until we go get the dog and alot to accomplish in those four months. Plus, the holiday's, finding a house and trying to move, and just a bunch of stuff. My head hurts just thinking about. Thank you for all your support. We'd never make it without y'all!
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