Do you want the good news or the bad news...
Okay good news. We got an appt with the specialist in Houston for March 7th, but she will start corresponding with us and Dr. Benzick as soon as we send her our medical records. Her office was super nice when I talked to them. So I am very excited!
Bad news. I have a sinus infection that is turning into bronchitis. I don't feel bad other then my chest is killing me. If I didn't have to breathe or talk, I would be great! So I am starting antibiotics and increasing all my asthma meds. I am just keeping my fingers crossed that Alex doesn't get sick.
Best news- Mimi and PopPop get here in the morning. We can't wait!
Ali
Alex and Maddy
Thursday, January 3, 2008
Wednesday, January 2, 2008
I hope everyone had a very Merry Christmas and a Happy New Year!
We had a wonderful Christmas. Alex was so happy. We barely saw him for 2 days as he stayed in his play room enjoying all his new stuff. Santa was very good to all of us. The nicest gift was watching Alex and my Dad enjoy each others company. The last two times we have been with Grandpa, Alex has really loved being with him. It is so nice to see.
I got a beautiful new digital slr camera, so look out you could be bombarded with new pictures of my lovebug!
The last couple weeks have been a real rollercoaster of emotions. Between trying to get the stroller and waiting to hear from Cincinnati, my patience has definitely been tried. Things are really staring to look up though. After much pursuing it looks like the stroller is before the review board right now and we should know something in the next week to 10 days. Then it will take about 2 weeks to get the stroller once the order is placed. I also heard from the neurology department at Cincinnati (finally)! They are still waiting on the DNA tests to come back. They do not want to make a commitment to doing the muscle biopsy without seeing the DNA results. Reason being that if the DNA test is positive we won't need to do the muscle biopsy. The nurse was working on tracking down the results and then will get back with me. The bloodwork that they do have back all points to a metabolic/mitochondrial disorder. So at least we know we may be close to finally having some answers.
Another positive...through some parents online, I got the name of a mitochondrial specialist in Houston who is supposedly WONDERFUL. The parents have all been raving about her. It will be really nice to have someone within driving distance to walk us through this. She is also great about communicating by phone and email. We will still use Dr. Putnam for our GI stuff in Cincinnati, but we are hoping to only have to travel once or twice a year. As I learn more I will continue to update.
Thank you for the blessing you all are in our lives.
Love always,
Ali
We had a wonderful Christmas. Alex was so happy. We barely saw him for 2 days as he stayed in his play room enjoying all his new stuff. Santa was very good to all of us. The nicest gift was watching Alex and my Dad enjoy each others company. The last two times we have been with Grandpa, Alex has really loved being with him. It is so nice to see.
I got a beautiful new digital slr camera, so look out you could be bombarded with new pictures of my lovebug!
The last couple weeks have been a real rollercoaster of emotions. Between trying to get the stroller and waiting to hear from Cincinnati, my patience has definitely been tried. Things are really staring to look up though. After much pursuing it looks like the stroller is before the review board right now and we should know something in the next week to 10 days. Then it will take about 2 weeks to get the stroller once the order is placed. I also heard from the neurology department at Cincinnati (finally)! They are still waiting on the DNA tests to come back. They do not want to make a commitment to doing the muscle biopsy without seeing the DNA results. Reason being that if the DNA test is positive we won't need to do the muscle biopsy. The nurse was working on tracking down the results and then will get back with me. The bloodwork that they do have back all points to a metabolic/mitochondrial disorder. So at least we know we may be close to finally having some answers.
Another positive...through some parents online, I got the name of a mitochondrial specialist in Houston who is supposedly WONDERFUL. The parents have all been raving about her. It will be really nice to have someone within driving distance to walk us through this. She is also great about communicating by phone and email. We will still use Dr. Putnam for our GI stuff in Cincinnati, but we are hoping to only have to travel once or twice a year. As I learn more I will continue to update.
Thank you for the blessing you all are in our lives.
Love always,
Ali
Friday, December 21, 2007
I feel like I always post how hard things are so I wanted to post about a few blessings this week...
The stroller has been submitted to insurance for authorization. Our fingers are still crossed to get it done by the end of the year.
We have the name of a dr that could possibly help us sort out the Mitochondrial stuff in Houston. She has gotten rave reviews from numerous parents.
One of my oldest and dearest friends, Erin, (who is a marine and overseas right now) had her church make Alex and I prayer quilts. They are gorgeous and it is so comforting to know how many people are praying for Alex. I will post pictures as soon as I get some taken.
Alex loves the feeling of weight on him. He actually puts pillows on top of himself to fall asleep. Elizabeth (his therapist) and I had talked about getting him a weighted blanket. When I started looking they were between $80 and 150. We decided it was something we couldn't afford right now. I asked Mom about making one. She emailed a lady about how to do it. The woman emailed mom and offered to make Alex a blanket for free after Christmas. It is people like that who make this world a nicer place.
Alex's therapist is working on getting Alex a special tricycle to help with his strength and endurance. He loves it. He has been using it at therapy and is so excited to have his own bike.
We also have the name of a place that does free therapeutic horse back riding. We are hoping to get Alex started in that after the new year.
The biggest blessing of all is that Grandpa is here!!!
So as you can see, all in all a pretty good week! We spoke to cincinnati Wednesday morning. Dr. Putnam's office is trying to get in touch with the neurologists office since I have had no luck. I will let you know as soon as I know anything.
Have a very Merry Christmas!
Love,
Ali
The stroller has been submitted to insurance for authorization. Our fingers are still crossed to get it done by the end of the year.
We have the name of a dr that could possibly help us sort out the Mitochondrial stuff in Houston. She has gotten rave reviews from numerous parents.
One of my oldest and dearest friends, Erin, (who is a marine and overseas right now) had her church make Alex and I prayer quilts. They are gorgeous and it is so comforting to know how many people are praying for Alex. I will post pictures as soon as I get some taken.
Alex loves the feeling of weight on him. He actually puts pillows on top of himself to fall asleep. Elizabeth (his therapist) and I had talked about getting him a weighted blanket. When I started looking they were between $80 and 150. We decided it was something we couldn't afford right now. I asked Mom about making one. She emailed a lady about how to do it. The woman emailed mom and offered to make Alex a blanket for free after Christmas. It is people like that who make this world a nicer place.
Alex's therapist is working on getting Alex a special tricycle to help with his strength and endurance. He loves it. He has been using it at therapy and is so excited to have his own bike.
We also have the name of a place that does free therapeutic horse back riding. We are hoping to get Alex started in that after the new year.
The biggest blessing of all is that Grandpa is here!!!
So as you can see, all in all a pretty good week! We spoke to cincinnati Wednesday morning. Dr. Putnam's office is trying to get in touch with the neurologists office since I have had no luck. I will let you know as soon as I know anything.
Have a very Merry Christmas!
Love,
Ali
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