Well the kids are doing okay today... Sophie had some rocky moments, but they are both okay for now...
Sophie: Well, we got a good report at Sophie's Neurology appointment today. We got a call that it had been moved from 9:00 to 10:15, so we ended up finally getting to see him around 10:40 and he did a very thorough exam. This man is the best in the world at this disorder supposedly, so to see him give her a work up was mind boggling. I think he checked everything going on with her. It was great. It took a long time, but even though she was very shy at first, she warmed up. He speakes with an accent, so I think it took some getting used to. She said her favorite part was when he took the vibrating tong and put it on her hands and feet and tested how long it would take her to stop feeling it. He asked a ton of questions, and after she got over her initial shyness, I think she did really well. He wrote a bunch of notes and kept having to run out into the hallway to give his notes to someone and they would type it into the computer. He said that today was their first day on a new computer system. Lucky us! It just meant everything took ten times longer than normal, but it was okay. We all desperately want her to get better, so I think her opening up to such a qualified physician was a great thing. You can't put a time limit on that... He said that she is going to continue to have issues with what he is calling a "generalized disautonomic disorder" but that she should get better with the treatment he is prescribing. He also recommended that we increase her iron because she was severely anemic. He has also recommended vitamin D3 because her vitamin D was low and a few other prescriptions. He said that she should continue to improve.
Then.... we went to the lab. Sophie and I waited and waited until her name was called. She has MAJOR needle anxiety and this was no different. They called her name and said to go to the orange room and then someone came in to stick her. She looked for a vein for a long time. Then, she tried to stick my little angels hand. The woman said she was having trouble getting a vein and that the vein wasn't pumping so she called for back up. Three other techs came in. Sophie started hyperventelating, sweating and got really really red and hot. She was scared to death. The one kindof motherly tech started wiping Sophie's face off with a rag. Sophie started to calm down a little bit. Then the bad news...They were only able to get about 8 cc's and they needed more for the tests they wanted to run. Then, they said they needed to go talk to the supervisor to see if they could get the rest with a finger stick. Sophie started to get more upset. She was really having a tough time... They came back, and got the rest of the blood that they needed but not without a few tears. She is so anxious about bloodwork. I do everything I can to comfort her but her anxiety is through the roof. But, with a promise of going to my office for the balance of the day, Sophie did well. After many long hours at the clinic, we finally got to leave and she was happy as a clam sitting at my office credenza, drinking and Diet Dr. Pepper and playing her game. She's such a kind hearted little girl, it's hard for me to see her have to go through this.
As far as Aiden, the Adenoid/Tubes surgery is in just over a week and though I am nervous, I know he will be allright because he is in good hands. Though I know there could be risks, I also know that he's gone through tubes surgery before and he did really well. And, overall it really helped him have less ear infections than before.
WEDDING NEWS!!! Well... Here it is... After planning for a few months now and realizing that waiting 'til June 2012 with all of the trips back and forth, we've decided to move the wedding up! So, we are getting married in December instead. The wedding is going to be beautiful and we are all very much looking forward to it.
We're going to have a small wedding with our closest family and friends. We appreciate in advance, your prayers for a long and happy marriage. We are overjoyed!
Goodnight Friends,
J
I am a Christian mom of two kiddos with medical challenges (Histiocytosis-X, Dysautonomia, Epilepsy, Cerebral Palsy) who wants to share my story to inspire others to keep going and leaning on God while living life fully today! This blog is intended to express that we are living life fully today... one day at a time... no matter what happened yesterday or what will happen tomorrow.
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Wednesday, November 2, 2011
Tuesday, November 1, 2011
Courage
C'mon PARENTS, GET OFF THE BENCH!!!
In the movie, Courageous, they call out absentee or lukewarm fathers, they call on them to GET IN THE GAME! While I agree that these men need to take responsibility, I feel that as women, we ALSO need to step up to the plate for our children (whether we are single or married) and instill in them the values we want them to mirror to the world. Regardless of whether we have a man who is willing to step up and be the father he needs to be for his kids or not, we still need to take a stand for them and point them toward the best choices possible. Parenting is no easy task, and I am by no means an expert. However, one of the most pogniant questions asked in the film is that if you knew today that your child wasn't going to be with you tomorrow, what would you change?
Would you color with her when all she really wants is time with you? Would you change the way you speak to your teenage daughter who gives you that smirk across the dinner table just to test you? Would you laugh more with the toddler who just wants to roll around on the carpet and be silly? Would you have that shoulder-to-shoulder friendship you know your college aged children are desperate for? Would you take the time to give him the one hug that you said you didn't have time for this morning? Would you listen more? What would you do?
Having two kids with recurrent medical issues, I have had a lot of time to think about this. To cry and think about what might be... and all I can say is that we must do the best we can, strive to be better parents than we know how to be, and savor the time we DO have. Live life fully today, and count your blessings one by one because TODAY, friends... TODAY may be all we've got.
In closing, I hope that for each and every one of you this causes you to take a moment and hug the ones you care about.
Dear God, Be with my friends who don't take the time to savor each moment with their children. Take their hearts and turn them towards You, so they might see grace and peace. It's in Your Son's precious name we pray, Amen.
Goodnight friends,
J
In the movie, Courageous, they call out absentee or lukewarm fathers, they call on them to GET IN THE GAME! While I agree that these men need to take responsibility, I feel that as women, we ALSO need to step up to the plate for our children (whether we are single or married) and instill in them the values we want them to mirror to the world. Regardless of whether we have a man who is willing to step up and be the father he needs to be for his kids or not, we still need to take a stand for them and point them toward the best choices possible. Parenting is no easy task, and I am by no means an expert. However, one of the most pogniant questions asked in the film is that if you knew today that your child wasn't going to be with you tomorrow, what would you change?
Would you color with her when all she really wants is time with you? Would you change the way you speak to your teenage daughter who gives you that smirk across the dinner table just to test you? Would you laugh more with the toddler who just wants to roll around on the carpet and be silly? Would you have that shoulder-to-shoulder friendship you know your college aged children are desperate for? Would you take the time to give him the one hug that you said you didn't have time for this morning? Would you listen more? What would you do?
Having two kids with recurrent medical issues, I have had a lot of time to think about this. To cry and think about what might be... and all I can say is that we must do the best we can, strive to be better parents than we know how to be, and savor the time we DO have. Live life fully today, and count your blessings one by one because TODAY, friends... TODAY may be all we've got.
In closing, I hope that for each and every one of you this causes you to take a moment and hug the ones you care about.
Dear God, Be with my friends who don't take the time to savor each moment with their children. Take their hearts and turn them towards You, so they might see grace and peace. It's in Your Son's precious name we pray, Amen.
Goodnight friends,
J
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