I have not posted in a while. Claire has been doing REALLY well. She is starting to say new words, and imitate words we ask her to say. She is still very behind in speech though. She still sees Joanne once a week, and now she sees Wendy (who does JUST speech) every other week. Both ladies are angels. They are a perfect fit for our family and for Claire. I am so so thankful that God chose them to be her therapists!
Joanne is such an advocate for Claire and helps me understand processes/paperwork/what I need to do/who to call etc. SHE IS A GODSEND.
Claire was evaluated last month to be in the Special Education Program at the elementary school (but it would be PRESCHOOL) They would work specifically on what Claire needs. on what she is behind in. (We do not know if they think she needs to be in the program yet) My assumption after leaving evaluation is that she will need (obviously) lots of speech help, but the nurse told me from what she was seeing, Claire has a very strong refusal behavior. (I already knew this but chalked it up to her being 2 years old. But then when the nurse mentioned it, it dawned on me that she is VERY independent and ONLY does things on HER terms)
I think the evaluation went well (meaning, I think they got a good picture of how Claire behaves and what she can and cannot do) Some kids may cry the whole evaluation and that may not be a normal behavior and so then they would have to retest. So I am glad we were not asked to re-test.
We will find out on December 2 what the results are. An entire team of people are getting together to come up with a plan for Claire. (IF they think that this program will benefit her) If they decide she is behind enough in one area they will come up with a plan for Claire and tell me their suggestion of when and how long she should be in the preschool program. (2 days a week, 5 days a week, 2 hours a day or 6 hours a day. It is all specific for each child in the program.)
Please continue to pray for Claire. I really believe God's hand is on her life as he has used Claire to answer a lot of prayers in a tangible way. He has shown me that He is in control and He's got this.
"Be still and know that I am God" Psalm 46:10
We would be so grateful for any more donations on her gofundme page. I am stunned and just full of joy, hope and GRATITUDE seeing all the donations in the past couple months. It is a HUGE weight lifted off of our family. We had a big chunk of time with no insurance and so the bills became enourmous. The amount just snowballed and felt impossible to ever pay off. BUT GOD IS GOOD and HE IS FAITHFUL. With man, things are impossible. When I am in control, LOTS of things are impossible. But when I handed over the ropes to GOD, he showed me that all things are POSSIBLE. WITH HIM. Seriously, I never in my wildest dreams thought people would donate $9,000 to help us. Crazy.
If it is on your heart to donate or share the link it is posted below:
http://www.gofundme.com/clairetdobbs
Tuesday, November 18, 2014
Saturday, October 11, 2014
SHE TALKS!
fb post:
I basically have the best news in the entire world! First, as most of you know, Claire is like the dog whisperer of the family and also has epilepsy and a learning delay . . . .But before we moved to Vegas, family members basically adopted Zoey as we had no idea where we would live, how it would be with no back yard etc. and they have land and horses and Zoey has lots of room to run (great for a boxer) and she has a lab brother named Fonzie. (just in case anyone is wondering) Well, we stumbled upon a dog here in Vegas that needed a home, we adopted him and he has changed everything. (Claire had been saying a few words before we got Remi, but not often) THE NIGHT we bring home the dog, Claire turns a corner!! We were all playing with Remi and with no prompting and no teaching her the words, she just busts out "GOOD BO" (good boy) and "DROP" (drop it. . when he has the ball). . . and then its literally been crazy since then. Her therapist was SOOOO PLEASANTLY SURPRISED and could not believe what she was seeing! We went outside, CLaire pointed to the sky and said "pairplane" (airplane) all by herself. No one pointed to the plane or noticed it. I can ask her a question like "where is the doll?" and she will say "I dunno." She says "I sad" "I stuck" . . . She just said YES/YEAH for the first time. (she always says no for everything) Oh another new one from TODAY is "I CLI" (I climb) and not only is she talking, she is using the words in the right context!!!!!!!!!!! Like. . . what the heck!!! It all started with Remi. We go outside to let Remi out and Claire will say poooooo. She says "morning" . . .TOday she played with dinosaurs and made them say "night night" (pretend play which she really hasn't done much of) If i hand her something or she gives me something she will say "dareyago" "hereyago" AND an hour ago, she wanted to help clean. So i gave her a rag and sprayed windex on the cabinet and when she wanted me to spray it again she said "ceen" (clean) THIS IS ALL IN 3 DAYS!
God is good all the time. Really. I firmly believe we are here in Nevada for a reason. My baby is TALKING PEOPLE!! and SEIZURE FREE for 10 months now!!!!!!!
More new words last night and this morning. "Cup" "Hands" "tickle tickle" "not yet" aaand when Austin came home she looked at him and said "DADDY!" so so clear.
I can't even explain the relief I feel inside!!!!! I am so grateful for everyone who has prayed for Claire. Our prayers are being answered!
I basically have the best news in the entire world! First, as most of you know, Claire is like the dog whisperer of the family and also has epilepsy and a learning delay . . . .But before we moved to Vegas, family members basically adopted Zoey as we had no idea where we would live, how it would be with no back yard etc. and they have land and horses and Zoey has lots of room to run (great for a boxer) and she has a lab brother named Fonzie. (just in case anyone is wondering) Well, we stumbled upon a dog here in Vegas that needed a home, we adopted him and he has changed everything. (Claire had been saying a few words before we got Remi, but not often) THE NIGHT we bring home the dog, Claire turns a corner!! We were all playing with Remi and with no prompting and no teaching her the words, she just busts out "GOOD BO" (good boy) and "DROP" (drop it. . when he has the ball). . . and then its literally been crazy since then. Her therapist was SOOOO PLEASANTLY SURPRISED and could not believe what she was seeing! We went outside, CLaire pointed to the sky and said "pairplane" (airplane) all by herself. No one pointed to the plane or noticed it. I can ask her a question like "where is the doll?" and she will say "I dunno." She says "I sad" "I stuck" . . . She just said YES/YEAH for the first time. (she always says no for everything) Oh another new one from TODAY is "I CLI" (I climb) and not only is she talking, she is using the words in the right context!!!!!!!!!!! Like. . . what the heck!!! It all started with Remi. We go outside to let Remi out and Claire will say poooooo. She says "morning" . . .TOday she played with dinosaurs and made them say "night night" (pretend play which she really hasn't done much of) If i hand her something or she gives me something she will say "dareyago" "hereyago" AND an hour ago, she wanted to help clean. So i gave her a rag and sprayed windex on the cabinet and when she wanted me to spray it again she said "ceen" (clean) THIS IS ALL IN 3 DAYS!
God is good all the time. Really. I firmly believe we are here in Nevada for a reason. My baby is TALKING PEOPLE!! and SEIZURE FREE for 10 months now!!!!!!!
More new words last night and this morning. "Cup" "Hands" "tickle tickle" "not yet" aaand when Austin came home she looked at him and said "DADDY!" so so clear.
I can't even explain the relief I feel inside!!!!! I am so grateful for everyone who has prayed for Claire. Our prayers are being answered!
Wednesday, September 10, 2014
Med Diag from Oct 2013
OK so Claire has been seizure free since Jan 5. Since then, I have no focused as much on her "diagnoses" or test results, bc HEY my baby is doing better! BUT- after meeting weekly with Joanne, Claire's therapist, she has really dived into all of the documents, diagnoses, reports we have as she is helping us to apply for programs to help. So she needs to know all this information. SO below I am going to copy the exact diagnoses. I need to find out why no one has mentioned to me anything about metabolic stuff?? Is it because seizures are under control with the medicine (Onfi) and so there is no reason to look further?? Is there something else affecting Claire that we don't know about or are not addressing??. . (which is what Joanne is working on- trying to get us into see their nutritionist, geneticist etc). We do go back to Katy in December to see the geneticist at TX Children's for the FIRST time. I know we will get answers to a lot of questions then. Okay enough rambling. . . I may have made no sense above, but to me it makes since and I like having this blog because I can go back and read this stuff when doctors ask dates and times and what was going on at this time etc. Because EVERY day things change and I cannot keep up without keeping some sort of log. After this I am going to call neuro..and ask a bunch of questions. Which I have already done, so I cant believe I missed this. . .Maybe the metabolic things are just possibilities rather than something she HAS and thats why noone has mentioned it? not sure. . . Another thing Joanne said to do is that I need to get any reports I can get my hands on from all of Claire's EEG's, MRI, just everything she has ever had.
Here is the medical diagnoses that was written OCT 2013 to send to insurance to show them that she has epilepsy and tell them that something is wrong and we need this testing. It took about 6 months just to get everyone on the same page with all the right paper work and about a million phone calls from me. (That bill is NOT included in the amount on the gofundme)
"Claire has a complex medical condition, the etiology of which remains undetermined. Claire has a developmental encephalopathy with global delays, dysmorphic features and cryptogenic generalized epilepsy with clusters of epileptic spasms. The underlying etiology of her delays and epilepsy is almost certainly a genetic condition that may represent a metabolic disorder, including Glucose Transporter Deficiency, or one of the Progressive Myoclonic Epilepsies. It is medically essential that comprehensive genetic testing be performed to determine the underlying etiology, as this will guide therapy and help anticipate the future. Genetic testing could be ordered for various conditions individually and this would require that a lumbar puncture be performed. However, Whole Exome Sequencing can now be performed that is a single test and is much less expensive than ordering all the studies separately."
Here is the medical diagnoses that was written OCT 2013 to send to insurance to show them that she has epilepsy and tell them that something is wrong and we need this testing. It took about 6 months just to get everyone on the same page with all the right paper work and about a million phone calls from me. (That bill is NOT included in the amount on the gofundme)
"Claire has a complex medical condition, the etiology of which remains undetermined. Claire has a developmental encephalopathy with global delays, dysmorphic features and cryptogenic generalized epilepsy with clusters of epileptic spasms. The underlying etiology of her delays and epilepsy is almost certainly a genetic condition that may represent a metabolic disorder, including Glucose Transporter Deficiency, or one of the Progressive Myoclonic Epilepsies. It is medically essential that comprehensive genetic testing be performed to determine the underlying etiology, as this will guide therapy and help anticipate the future. Genetic testing could be ordered for various conditions individually and this would require that a lumbar puncture be performed. However, Whole Exome Sequencing can now be performed that is a single test and is much less expensive than ordering all the studies separately."
Joanne
post from facebook:
Claire's new therapist Joanne is an angel yall. I am SERIOUS! She comes over with more research than anyone (besides me or my mom) has ever done on Claire and all of the big crazy words in her diagnoses. She gives me SPECIFIC examples of things to do with Claire to encourage her talking. I cannot say ENOUGH good things about her. She is helping us figure out every program we can apply for to get help for Claire, medical bills etc. She is AMAZING. Thank you for everyone who prayed for Joanne. . . God is good.
Wednesday, August 27, 2014
Saturday, July 12, 2014
Friday, January 17, 2014
Jan 17 2014 after DR
Update after seeing Dr Wilfong- on my phone so sorry for spelling or grammar mistakes.
Her seizures have changed to grand mal seizures which are much more common and much easier to treat. Before she was having "clusters."
He think it's very unlikely that she was having drop seizures as he would have seen activity on her EEG that was a couple of days ago.
Her EEG showed MAJOR IMPROVEMENT!! He said they are looking at the activity happening between seizures and Claire's was nearly gone!! Aaaannnndddddd before she was having activity all over the brain, now it was only in front right love of brain. Which is awesome news. Also because it's in one part of her brain- if something happens and she starts having seizures that we can't control w medicine then she could be a candidate for surgery. Before that would never have been an option since she has activity all over the brain.
Our next step, is if she continues to do well, having not many seizures, then in a month we will start to play with her meds. BC she is on three meds. So the last one we added was onfi. So there are two possibilities- 1, that the onfi has made her seizures stop by itself, OR 2, it's the combo of all three that is working. So we will decrease zonegran and go from there....
And her development is great and she is talking and doing awesome!
Praise GOD!!!
Her seizures have changed to grand mal seizures which are much more common and much easier to treat. Before she was having "clusters."
He think it's very unlikely that she was having drop seizures as he would have seen activity on her EEG that was a couple of days ago.
Her EEG showed MAJOR IMPROVEMENT!! He said they are looking at the activity happening between seizures and Claire's was nearly gone!! Aaaannnndddddd before she was having activity all over the brain, now it was only in front right love of brain. Which is awesome news. Also because it's in one part of her brain- if something happens and she starts having seizures that we can't control w medicine then she could be a candidate for surgery. Before that would never have been an option since she has activity all over the brain.
Our next step, is if she continues to do well, having not many seizures, then in a month we will start to play with her meds. BC she is on three meds. So the last one we added was onfi. So there are two possibilities- 1, that the onfi has made her seizures stop by itself, OR 2, it's the combo of all three that is working. So we will decrease zonegran and go from there....
And her development is great and she is talking and doing awesome!
Praise GOD!!!
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