Lots and lots happening this week!
First of all, in my family several changes and prayer requests. My brother Isaac and his family moved up from Las Vegas on Tuesday and are in the midst of getting settled before baby Valor makes his appearance in the next couple of weeks. My brother Luther's wife had an emergency c-section of her twin girls on Wednesday morning at almost 27 weeks along. Emma and Grace are doing well considering, but need lots of care and prayers.
Aimee and I met with her Naturopath on Monday and are being referred to Neurology at Children's, because it appears that Aimee may be having seizures. Wednesday we had a Respiratory Therapist come over to teach us how to use Aimee's new suction machine. Should be really helpful! Wednesday afternoon we had her Occupational Therapy appointment and, again, Aimee was cheerful and energetic. Thursday we met with the Teacher of the Visually Impaired and the School District. We were brought several more pieces of equipment for Aimee's collection. I am seriously considering getting rid of our spare bed and making that room into a gym for Aimee...if only you could see all the pieces she is collecting! There may not be room for Ed and I to live there soon! I also talked with the school district about adding Speech Therapy and Physical Therapy. There is a strong possibility that both of these may begin over the summer. They are strongly encouraging us to start her in a school program this Fall (already!?!). Not sure how we feel about that at this point.
3.18.11
First things first, we are so blessed! Aimee received a check yesterday from a Komo 4 news viewer for the entire cost of the chair. All of the funds raised through the baby photo contest will be put into Aimee's medical expense account to cover her upcoming costs. We are just so thankful for the active support we have received from all of you. It means so much to us that you care about Aimee and took the time to show it. What a weight has been lifted off of our shoulders!
I've attached both of the news casts below, just in case you haven't had an opportunity to view them yet.
Updates from this week:
Aimee and I had a long visit with Opthalmology on Tuesday. According to this doctor, Aimee has great vision and can see perfectly. The signal input to the vision center in her brain is working fine. He believes that she has a form of CVI (cortical vision impairment) called Sensory Mobility Disconnect. Essentially what this means is that the information is coming in to her brain, but the "signal strength" is so low that the information is not getting to her brain stem. The brain stem would typically send a signal then to the eyes and tell them to follow an object or to look at a person over there, ect. We are going to have a test done in a couple of weeks to see if her brain stem is a part of the issue or if it is just the connection between the two.
I've attached both of the news casts below, just in case you haven't had an opportunity to view them yet.
Updates from this week:
Aimee and I had a long visit with Opthalmology on Tuesday. According to this doctor, Aimee has great vision and can see perfectly. The signal input to the vision center in her brain is working fine. He believes that she has a form of CVI (cortical vision impairment) called Sensory Mobility Disconnect. Essentially what this means is that the information is coming in to her brain, but the "signal strength" is so low that the information is not getting to her brain stem. The brain stem would typically send a signal then to the eyes and tell them to follow an object or to look at a person over there, ect. We are going to have a test done in a couple of weeks to see if her brain stem is a part of the issue or if it is just the connection between the two.
3.11.11
-Picture of the chair, but Aimee's will be blue-Aimee and I met with Physical Therapy's Durable Equipment Specialist at Children's on Wednesday morning. I was so pleased with how attentive and detailed he was. We were able to compare a few options, but ended up going back to the same chair we tried to order last year. I am so thankful that we will be ordering through Children's, because once we have the chair they will completely customize it to her needs.
When the appointment was over, he said that they should be able to get us a chair in about 4 months. Uhh. I felt like I was going to cry. Seriously? Thank goodness, because I felt disappointed enough to say...are there any other options? Here we have been waiting 6 months already, I wasn't sure I could make it 4 more. Then an amazing thing happened. He said that if I could pay for it up front they would be able to get it to us in about 6 weeks. Thank the Lord for this amazing fundraiser that enabled me to say "YES! I can!". Hallelujah! I can hardly wait to get the chair!
We were also able to pick up Aimee's new hearing aid molds from Audiology while we were there. They fit great. Not the right color and you can't really see the stars, but I guess that isn't really the point. :)
Wednesday afternoon was Aimee's Occupational Therapy. Aimee worked really hard and the therapist was very pleased with her efforts.
Thursday afternoon was Aimee's 2 year check up at the Naturopathic MD. We love this doctor so much. Aimee is growing quickly, as you can easily see. She is in the 95th percentile for height and about 60th percentile for weight. Her head circumference has increased by a half of a centimeter in the last 6 months, which is a very sad amount, but at least it grew!
Other notes from this appointment:
-He is going to write up a prescription for a suction machine, which I am really happy about. Hopefully that will prove helpful, especially for the times when Aimee is sick.
-He is also recommending that we begin Physical Therapy. It looks like Aimee's spine is beginning to curve, as she is always leaning/scrunched in one direction. I am hoping that having her fully supported in her wheel chair will help with this as well.
-He also encouraged us to ask the school district about starting Speech Therapy, now that Aimee is beginning to respond and listen.
Aimee is always keeping
us on our toes with new things!Please pray for us this week for direction. Ed's commuter car for work has officially died. We know God has a good plan for us and we are praying that He would show us what steps to take for a vehicle.
Also, we are pursuing having Ed's tonsils removed in pursuit of getting him good, quality sleep. We are working towards finding out if this procedure would be covered by our insurance. Thanks for your prayers!
-Aimee's 2nd Birthday-
3.8.11
I have so much to report from the last 48 hours...unfortunately I don't have time to fill you in at the moment. However, in case you missed the news, I attached the link to the clip from last night's broadcast. Tomorrow, Aimee and I are going down to meet with Physical Therapy's Durable Equipment Department! This wheelchair is going to happen!!!!!!!! Yippee and Hallelujah! I will have so much to tell you about it soon. Thank you thank you to each of you who posted link, shared the story and voted. You are making a huge difference in our lives at this very moment!
http://www.komonews.com/news/problemsolvers/117556838.html?tab=video
(For some reason I am having difficulty getting this link to work correctly... You'll have to copy and paste the link into your browser for now. )
3.4.11
Just spent a few minutes reading some of our blog posts from 2009, when we were first concerned about Aimee's development. Ugh...just reading the below post...it is exactly what I have been thinking about over this last week, those goals we set for Aimee. At that time, it seemed ridiculous to wonder. She would of course be able to walk by her 2nd birthday, right? WE HAVEN'T MET ANY OF THESE GOALS!!! Will I ever be able to face the fact that life will not go according to any plan I create? Thanks for praying for us. I am more blessed than ever by Aimee, but I want SOO much more for her. I want SOO much more for my relationship with her.
DeVoe Family: 12.3: "Yesterday we had 2 therapists and a resource coordinator come to visit. They will be coming over about 3 times a month to work with Aimee. T..."
DeVoe Family: 12.3: "Yesterday we had 2 therapists and a resource coordinator come to visit. They will be coming over about 3 times a month to work with Aimee. T..."
3.1.11
Had to cancel all of our appointments for last week, because there was just too much beautiful snow! However, we were totally blown away to receive a used wheelchair from our new friends that have a gorgeous little special needs girl. This chair is going to help get us through the next several months until we are able to get one that fits Aimee's exact needs. It is a HUGE HUGE HUGE blessing!!!! We are so honored that God connected us with this sweet family. (Pictures coming soon!)
Yesterday, Aimee and I spent the day down in Seattle for multiple appointments. We met with Genetics, which was rather uninteresting. The doctor is referring us to meet with a Genetic Neurologist for a second opinion. We have already taken Aimee through the first and second tier of genetics testing with no telling results. There are more tests, but nothing that matches Aimee's situation. They are essentially admitting to having no more bright ideas.
We also met with the GI clinic and the Nutrition clinic. We had Aimee's feeding button changed out, which we will do from home every 3 months from now on. They were really happy with Aimee's growth over the last few months and even seemed to be a bit proud that I was making her food. What a change!
The really exciting thing that happened yesterday is that we were finally able to get a referral to Feeding Therapy! At this point, I have no idea what this will look like, but it is a step in the right direction. It may start with another swallow study and then probably add an additional weekly appointment. Should have more information on this in the coming weeks. HOORAY!!!
Don't forget to vote, vote, vote! Every vote in the cutie pie contest goes to support Aimee...every vote makes a difference for us! Please check out the 63 too cute faces at erincoxphoto.com/blog. They are guaranteed to brighten your day!
Yesterday, Aimee and I spent the day down in Seattle for multiple appointments. We met with Genetics, which was rather uninteresting. The doctor is referring us to meet with a Genetic Neurologist for a second opinion. We have already taken Aimee through the first and second tier of genetics testing with no telling results. There are more tests, but nothing that matches Aimee's situation. They are essentially admitting to having no more bright ideas.
We also met with the GI clinic and the Nutrition clinic. We had Aimee's feeding button changed out, which we will do from home every 3 months from now on. They were really happy with Aimee's growth over the last few months and even seemed to be a bit proud that I was making her food. What a change!
The really exciting thing that happened yesterday is that we were finally able to get a referral to Feeding Therapy! At this point, I have no idea what this will look like, but it is a step in the right direction. It may start with another swallow study and then probably add an additional weekly appointment. Should have more information on this in the coming weeks. HOORAY!!!
Don't forget to vote, vote, vote! Every vote in the cutie pie contest goes to support Aimee...every vote makes a difference for us! Please check out the 63 too cute faces at erincoxphoto.com/blog. They are guaranteed to brighten your day!
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