We had our follow-up appointment at the ALS clinic on Tuesday. This is the clinic that was established at Mary Freebed which has doctors set up specifically for patients with ALS to be seen and evaluated. They recently had their grand opening as our first two visits in July and October, they were still in the startup phases of the clinic. Eric received a call from MDA to see if he would be willing to be interviewed for their Black and Blue Ball and Jerry Lewis telethon media and video footage needed for promotions for these fundraisers. He of course said yes. What he failed to tell me is they would be interviewing us BOTH, which was probably a good thing because I would have been very nervous had I known I had to talk too. The interview went well although every time we mentioned our faith, satan would interupt with a cell phone ringing or they ran out of tape. We know that the tape will be edited and they were looking more for how our life has been affected by ALS and what our hopes are for the new clinic and what the MDA has been doing, but how could we talk about our life without mentioning Christ and our hope in Him and how our faith is what get's us through the day!!
They followed us through our appointment with the camera in those tiny rooms with two or three doctors in at time as well. We saw a speech therapist, nutritionist, occupational therapist, a pulminary specialist and Dr. Averill. Speech and nutrition are great. The occupational therapist gave us a prescription for a lift chair to make it easier for Eric to get up from sitting. He sinks into the couch and has a very hard time getting up from that position. She said medicare may cover the motor portion with a script. She also told us what kind of beds to look at since Eric has been having a hard time sleeping and our mattress is getting pretty old. So it looks like we will need to go shopping for those items soon. The pulminary specialist checked Eric's breathing and compared it to his visit in July and said that it has gone down a little bit so she wanted to order a bipap machine for Eric to wear while he sleeps at night to help keep his lungs cleaned out and relieve the pressure for breathing both in and out so that he would wake up feeling rested and have more energy. This came as somewhat of a surprise to us as breathing capacity is a vital part of survival of ALS. We have been praying that the ALS will not have any effect on his breathing or swallowing so please continue to pray fervantly that this will remain the same and that the machine will be comfortable to wear and really help Eric. This machine is very similar to a cpap machine used for sleep apnea like the one my brother in law uses except that it helps with the in and out to make it as easy as possible for Eric. We should have it next week and she will bring and set it up at our house and show us how to use it. I know Eric is having a hard time with this. During these visits at the clinic, you hope to hear that nothing has changed and you don't need to come back for 6 months. Our next visit is in 6 weeks to followup on the bipap and then we will return in 3 months. Dr Averill didn't have a lot new to say except that the bipap has only been shown to help people with ALS in many good ways. He actually showed a little sense of humor this visit which helped lighten up the day. He is usually very quiet and subdued.
I have to say that Eric leaves an impression with everyone he meets because he is always so joyful and that is something to remember. Not everyone walks around with joy in their heart especially during a trial like this. I am so grateful for my husbands attitude and choice on how to deal with this disease. We talk so often about things because we spend so much time together during appointments, excercises, sauna and every meal we share together. We can still laugh with each other and cry together and he just means the world to me and my kids. I have to say I can't imagine loving him more during this time.
We have been talking more and more about the idea of building and being prepared IF things change. I have to always say if not when. Pastor Dobson also taught us that. We are aware that a house doesn't just come together overnight and there are alot of decisions to be made. We will likely list our house in the next month or two as we explore what is out there for us. Please pray that our house would sell quickly if that is God's will for us to move.
We are looking forward to Spring break next week and sleeping in. We have been on the go way too much this week and need some down time. Eric and my dad have been working on a video of Eric's life for the ALS Advocacy trip to Washington DC and I just had to pull a couple pictures of my cutie pie husband when he was little for you to see that he smiled that big when he was little too!
They followed us through our appointment with the camera in those tiny rooms with two or three doctors in at time as well. We saw a speech therapist, nutritionist, occupational therapist, a pulminary specialist and Dr. Averill. Speech and nutrition are great. The occupational therapist gave us a prescription for a lift chair to make it easier for Eric to get up from sitting. He sinks into the couch and has a very hard time getting up from that position. She said medicare may cover the motor portion with a script. She also told us what kind of beds to look at since Eric has been having a hard time sleeping and our mattress is getting pretty old. So it looks like we will need to go shopping for those items soon. The pulminary specialist checked Eric's breathing and compared it to his visit in July and said that it has gone down a little bit so she wanted to order a bipap machine for Eric to wear while he sleeps at night to help keep his lungs cleaned out and relieve the pressure for breathing both in and out so that he would wake up feeling rested and have more energy. This came as somewhat of a surprise to us as breathing capacity is a vital part of survival of ALS. We have been praying that the ALS will not have any effect on his breathing or swallowing so please continue to pray fervantly that this will remain the same and that the machine will be comfortable to wear and really help Eric. This machine is very similar to a cpap machine used for sleep apnea like the one my brother in law uses except that it helps with the in and out to make it as easy as possible for Eric. We should have it next week and she will bring and set it up at our house and show us how to use it. I know Eric is having a hard time with this. During these visits at the clinic, you hope to hear that nothing has changed and you don't need to come back for 6 months. Our next visit is in 6 weeks to followup on the bipap and then we will return in 3 months. Dr Averill didn't have a lot new to say except that the bipap has only been shown to help people with ALS in many good ways. He actually showed a little sense of humor this visit which helped lighten up the day. He is usually very quiet and subdued.
I have to say that Eric leaves an impression with everyone he meets because he is always so joyful and that is something to remember. Not everyone walks around with joy in their heart especially during a trial like this. I am so grateful for my husbands attitude and choice on how to deal with this disease. We talk so often about things because we spend so much time together during appointments, excercises, sauna and every meal we share together. We can still laugh with each other and cry together and he just means the world to me and my kids. I have to say I can't imagine loving him more during this time.
We have been talking more and more about the idea of building and being prepared IF things change. I have to always say if not when. Pastor Dobson also taught us that. We are aware that a house doesn't just come together overnight and there are alot of decisions to be made. We will likely list our house in the next month or two as we explore what is out there for us. Please pray that our house would sell quickly if that is God's will for us to move.
We are looking forward to Spring break next week and sleeping in. We have been on the go way too much this week and need some down time. Eric and my dad have been working on a video of Eric's life for the ALS Advocacy trip to Washington DC and I just had to pull a couple pictures of my cutie pie husband when he was little for you to see that he smiled that big when he was little too!
Thank you as always for your prayers! It is so wonderful to live in such a small world where we hear that someone is praying for us through a prayer chain or through a friend that knows us. It is so good to know that we are the body of Christ and we can lift each other up in prayer even when we don't know each other.
Grace for the day,
Lori and Eric
Lori and Eric
1 comment:
Hello! We heard about your story via one of the families that traveled with you in China. Your faith is truly a blessing to our family and we will uphold your entire family in prayer. Thank you so very much for sharing. Warmest regards.
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