10.26.10
Please be praying for us over these next few weeks regarding the equipment orders that we have placed already and will be placing soon. We have Aimee's hearing aids, but do not have funds to pay for them. Thankfully, we also do not yet have a bill. :) We have ordered her a bath chair, which we have been informed that the insurance will now either cover completely or not at all. Tomorrow, we will be meeting with the wheelchair company to discuss options. We are pressing to place an order by the end of the year. Aimee is within a few inches of outgrowing her stroller's capacities and at the rate she has been growing will be out by her 2nd birthday. We would like to order now, hoping that the insurance will cover more of the cost, as we have met our stop loss limit for the year. Pray for favor and a timeliness with the insurance company. We should have an idea after tomorrow of the time line and hopefully an approximate out-of-pocket cost.
10.21.10
Aimee got her new hearing aids on Tuesday, when we met with the Audiologist. As you can see, they are pink and sparkly. Girlie, for a cute girlie. She seems to really like them. She has been telling me stories all day long. None that I understand... I'm thinking they might be in gaelic. We were able to get a set that were a bit cheaper (a bit like only $2,000, instead of $3,000!) and they came with a full warranty for 3 years, including a one time replacement. Depending on how fast her ears grow, we will get new ear molds made every 4-6 months (about $200). Normally they would test her hearing that often as well, however, as we have to put her under anesthesia, they are allowing us to go for a year in between tests.
Good news this week-I was able to get through to all the departments and companies that I have been struggling to connect with for the past several weeks. We ordered Aimee's bath chair (yeah, she will be cleaned more often), set up her next surgery appointments and made an appointment for a wheel chair fitting. Ugh, what a relief to finally get through!
10.14.10
I have been somewhat remiss the past weeks in updating the blog. This has been an unusual time for us. Ed has been working a lot of hours between his day job and side jobs. Aimee and I have been waiting-waiting for test results and return phone calls. We are trying to get a few pieces of equipment ordered through difference companies and trying to schedule surgery. It seems that everyone is out finding costumes for Halloween or something! I have never had so much trouble communicating with the hospital before!
I have started making 3 of Aimee's 4 daily meals and think that I have mastered the art of getting the consistency that the pumping machine will accept. Aimee's digestive system is already showing improvement. Still working on perfecting the nutrient aspects though.
We have also borrowed a few pieces of equipment from the therapist to try at home. I fixed some broken straps on the stander this week and it is in operation. Aimee and I spent yesterday around town finding objects to decorate her 'little room'. That was a fun project. The items are as different in texture, shape and sound as I could find. She hasn't had a lot of time to get acquainted yet, but I think she'll really enjoy it.
Speaking of equipment-where am I supposed to store all of this stuff?
9.24.10
Monday, Aimee and I met with the GI Nutritionist to discuss adjusting her diet to three meals of blended food with one of the formula. I have to admit that this is one of my least favorite departments. They seem to assume that you do not understand how to get proper nutrition to your child. The nutritionist was actually surprised to see that Aimee had still been gaining weight since I took over making one of the four meals for her. She was also quite upset that I bought a different type of industrial blender than the one they told me to. Really? If it works fine and doesn't clog the tube....isn't it my choice, especially considering I'm paying for it? Well, she is checking with the doctor on that issue! :)
They have also made it quite complex to add additional meals of blended food. Each meal has to match the exact calorie, protein, carbohydrate, fat, fiber, mineral and vitamin count found in the formula. Not over the course of a day or couple of days, but every single meal. It is like they are trying to make it impossible to do. I spent all day yesterday trying to come up with exact recipes and mostly I just ended up with frustration! I have 8 weeks to figure it out. They will then perform a dietary analysis to determine if I am meeting all of her needs for the three meals out of four. Oh my! Please pray for wisdom for me as I am working through these nutritional equations.
Aimee and I attended a workshop on Thursday to learn more about IEPs (Individual Education Program). It was with a group of parents of special needs children ranging from Aimee's age to 21. Interesting to learn about how the public school system works in regard to special needs and what the current laws are regarding the programs. A bit far into the future for us, but helpful to think through the challenges that parents a few years ahead of me are facing.
Aimee's chiropractic visits are going very well. She does seem to be trying to roll over from her back to her side quite a bit more in the last couple of weeks, although it is hard to say if that is a direct result of the chiropractic adjustments.
Another area of improvement has been in her eyesight. While it is still very
difficult to say how much she is able to see, the last week or two she has been focusing for a second or two longer on our faces. She also is able to see light and movement, we think.Thank you again to everyone who has been sharing our blog and website by email and facebook. Also, a BIG thank you to those who have been praying for us and those who have supported us with gifts and funds. We are VERY blessed by each one of you and overwhelmed by God's goodness to us through you.
9.17.10
Update on this week's appointments:
Naturopathic 18 month well child exam was yesterday. Aimee is 95th+ percentile for height (33 1/2 inches tall) and 70th percentile for weight (26 pounds, 4 ounces). She is clearly growing very well! She is half my height at 18 months old. Crazy! Her head circumference also increased some. Over the last year, her head has actually grown the average amount. It is still well below the 5th percentile though. Interesting. One piece of good news from this appointment is that we no longer have to go in for weekly weight checks. Good timing, as we are now adding the 3 chiropractic visits every week!
Aimee did not have her weekly occupational therapy appointment this week, so we will continue with that next week.
This morning we met with the GI department at Children's. The surgery site has been having increasing issues with growing granular tissue and leaking fluids of all sorts. We were given a couple of prescriptions to control the growth and hopefully reverse it, as well as, to protect the skin underneath.
Next week, we will have chiropractic care, occupational therapy and the GI nutrition department.
Naturopathic 18 month well child exam was yesterday. Aimee is 95th+ percentile for height (33 1/2 inches tall) and 70th percentile for weight (26 pounds, 4 ounces). She is clearly growing very well! She is half my height at 18 months old. Crazy! Her head circumference also increased some. Over the last year, her head has actually grown the average amount. It is still well below the 5th percentile though. Interesting. One piece of good news from this appointment is that we no longer have to go in for weekly weight checks. Good timing, as we are now adding the 3 chiropractic visits every week!
Aimee did not have her weekly occupational therapy appointment this week, so we will continue with that next week.
This morning we met with the GI department at Children's. The surgery site has been having increasing issues with growing granular tissue and leaking fluids of all sorts. We were given a couple of prescriptions to control the growth and hopefully reverse it, as well as, to protect the skin underneath.
Next week, we will have chiropractic care, occupational therapy and the GI nutrition department.
Extra! Extra! Aimee's new website!
Just published today-Aimee's new website!
No, she did not create it herself. :) Two of Aimee's aunties designed www.wix.com/devoefamily/aimee so that you can see what current and upcoming needs we have for Aimee. Please feel free to share this blog and the website with anyone who is interested in keeping up with us. Thank you for your support and prayer!
(Copy and paste www.wix.com/devoefamily/aimee in your browser or retype it.)
No, she did not create it herself. :) Two of Aimee's aunties designed www.wix.com/devoefamily/aimee so that you can see what current and upcoming needs we have for Aimee. Please feel free to share this blog and the website with anyone who is interested in keeping up with us. Thank you for your support and prayer!
(Copy and paste www.wix.com/devoefamily/aimee in your browser or retype it.)
9.14.10
Aimee's BAER hearing exam was last Friday. Aimee's Nana and I waited together while Aimee was under anesthesia. The test itself was about an hour and forty minutes. The results were almost identical to her March exam. She has mild to moderate hearing impairment. It has only been 6 months since her last exam, but we were intially hoping that 6 months of development might meen some improvement in hearing abilities. She also still has the same time delay between a sound entering her ear and reaching her brain. Given the results and the vast improvement she shows while using the hearing aids, we have decided to order a permanent pair, which we will have programmed in October.
Unfortunately, Aimee decided to stay asleep for about 2 hours longer than she was supposed to, which is always a bit nerve racking. As soon as the anesthesiologist mentioned the possibility of staying over night, she started to wake up. You have to wonder about this girl sometimes!
I received the clinic note from Aimee's most recent Genetics appointment yesterday. The Angelman syndrome test came back normal, as well as the muscle disorder test. We'll see if there are any further ideas that come out of the Genetics convention.
This week we just have the chiropractic visits, 18th month wellness check-up and a GI visit to clean up the surgery site. It seems like, from this point, the visits to Children's Hospital may be backing off to one visit a week on average versus three. Wonderful!
Unfortunately, Aimee decided to stay asleep for about 2 hours longer than she was supposed to, which is always a bit nerve racking. As soon as the anesthesiologist mentioned the possibility of staying over night, she started to wake up. You have to wonder about this girl sometimes!
I received the clinic note from Aimee's most recent Genetics appointment yesterday. The Angelman syndrome test came back normal, as well as the muscle disorder test. We'll see if there are any further ideas that come out of the Genetics convention.
This week we just have the chiropractic visits, 18th month wellness check-up and a GI visit to clean up the surgery site. It seems like, from this point, the visits to Children's Hospital may be backing off to one visit a week on average versus three. Wonderful!
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