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
Alex and Maddy
Friday, December 21, 2007
Friday, December 14, 2007
Sunday, December 9, 2007
Just wanted to give you a quick update...
Last week was a really long week. We drove to Irving 3 times and Dallas twice. All between 45 min and an hour away. It seemed like we never got out of the car. We are slowing getting some bloodwork back from Cincinnati. What has come back looks like it is pointing to a Mitochondrial or metabolic disorder. We are still waiting for some other stuff and then hopefully we'll get a chance to speak to the neurologist. We don't have a followup date set yet. The bloodwork most likely will not give us a firm diagnosis (there is a slim chance). Which means we will be headed for the muscle biopsy. We also had Alex's echocardiogram done this week, but results won't be back till Tuesday.
The majority of our week was spent with the therapist trying to decide what to do about a stroller. As most of you know Alex has a hard time with endurance and exercise. I still carry him EVERYWHERE! Alex is great about riding in his stroller, but he is outgrowing his "baby" stroller. We looked at many options and finally settled on one we are happy with. Now it is a matter of trying to get it through insurance before the end of the year. If it gets through claims it will be covered 100%. If it goes over into January we will have to pay for the majority of it to meet our deductible. It will all even out in the end, but it will feel much better to get it for "free"! Our therapist, Elizabeth, is awesome. Alex loves her (as do I) and she took so much time this week to help us muddle through all of the craziness of deciding on what to do and get the paperwork rolling.
The only other thing going on is Alex is having trouble with his belly. Since changing the tube, he has started to have excess tissue around his tube called granulation tissue. It is really painful and there is some discussion of whether it is infected. He has been on medicine since Tuesday, but it is not getting much better, so it looks like we are headed back to see Dr. B tomorrow. We think part of the problem is that Alex's tube is too big. You are only supposed to be able to fit a dime between his button and his skin. He has about 1/2" to an inch of room. It moves and is rubbing. So we have to talk to Cincinnati tomorrow about getting a different size.
On a positive note, it was so nice to see our friends this week. We went with playgroup to see a model train display. Alex loves his friends and he was so happy to play with them. Mommy was just as happy to have a chance to talk to her friends! Our playgroup has been so incredible from the beginning. They have really experienced this whole crazy 3 years with us and are always willing to help in whatever way they can. The girls see Alex just like I do- Just Alex with a smile on his face, not a sick little boy who spends more time at Dr's appts then any 3 year old should have to. Girls- you will never know how thankful I am for that.
To all of you- Thank you for being on this crazy journey with us. You are there when I need a shoulder to cry on. You are there when I need to complain. You are there when I need to laugh about the craziness of my life. For that I am forever grateful.
Love,
Ali
PS-Okay not such a "quick" update!
Last week was a really long week. We drove to Irving 3 times and Dallas twice. All between 45 min and an hour away. It seemed like we never got out of the car. We are slowing getting some bloodwork back from Cincinnati. What has come back looks like it is pointing to a Mitochondrial or metabolic disorder. We are still waiting for some other stuff and then hopefully we'll get a chance to speak to the neurologist. We don't have a followup date set yet. The bloodwork most likely will not give us a firm diagnosis (there is a slim chance). Which means we will be headed for the muscle biopsy. We also had Alex's echocardiogram done this week, but results won't be back till Tuesday.
The majority of our week was spent with the therapist trying to decide what to do about a stroller. As most of you know Alex has a hard time with endurance and exercise. I still carry him EVERYWHERE! Alex is great about riding in his stroller, but he is outgrowing his "baby" stroller. We looked at many options and finally settled on one we are happy with. Now it is a matter of trying to get it through insurance before the end of the year. If it gets through claims it will be covered 100%. If it goes over into January we will have to pay for the majority of it to meet our deductible. It will all even out in the end, but it will feel much better to get it for "free"! Our therapist, Elizabeth, is awesome. Alex loves her (as do I) and she took so much time this week to help us muddle through all of the craziness of deciding on what to do and get the paperwork rolling.
The only other thing going on is Alex is having trouble with his belly. Since changing the tube, he has started to have excess tissue around his tube called granulation tissue. It is really painful and there is some discussion of whether it is infected. He has been on medicine since Tuesday, but it is not getting much better, so it looks like we are headed back to see Dr. B tomorrow. We think part of the problem is that Alex's tube is too big. You are only supposed to be able to fit a dime between his button and his skin. He has about 1/2" to an inch of room. It moves and is rubbing. So we have to talk to Cincinnati tomorrow about getting a different size.
On a positive note, it was so nice to see our friends this week. We went with playgroup to see a model train display. Alex loves his friends and he was so happy to play with them. Mommy was just as happy to have a chance to talk to her friends! Our playgroup has been so incredible from the beginning. They have really experienced this whole crazy 3 years with us and are always willing to help in whatever way they can. The girls see Alex just like I do- Just Alex with a smile on his face, not a sick little boy who spends more time at Dr's appts then any 3 year old should have to. Girls- you will never know how thankful I am for that.
To all of you- Thank you for being on this crazy journey with us. You are there when I need a shoulder to cry on. You are there when I need to complain. You are there when I need to laugh about the craziness of my life. For that I am forever grateful.
Love,
Ali
PS-Okay not such a "quick" update!
Saturday, December 1, 2007
We are home and settling in. We had a really nice time visiting Mimi, PopPop, and Grandpa. We are glad to be home and getting back to normal.
I am still waiting to hear back from the neurologist about results and when our next trip to Ohio will be.
This Sunday night December 3rd, Extreme makeover: Home Edition will feature a family of 4 kids with eosinophilic disorders. It comes on ABC at 8:00 EST. We will be watching!
I am so thankful for the blessing that so many of you are in my life. You have been such a great source of strength and inspiration. The love and friendship you have shown to us has been so appreciated. I love you all.
Ali
I am still waiting to hear back from the neurologist about results and when our next trip to Ohio will be.
This Sunday night December 3rd, Extreme makeover: Home Edition will feature a family of 4 kids with eosinophilic disorders. It comes on ABC at 8:00 EST. We will be watching!
I am so thankful for the blessing that so many of you are in my life. You have been such a great source of strength and inspiration. The love and friendship you have shown to us has been so appreciated. I love you all.
Ali
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