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Friday, August 10, 2012

SALT LAKE CITY OR BUST


Our vacation to Salt Lake City was interesting to say the least. Our two china babies stayed home with Grandma, while MaKayla, Amornthep, Hana, Brandon, and our friend Elena Hamel, set out for SLC on Friday, 8/3. It was fairly uneventful our first few days. We stayed the night in Boise with Elena’s relatives and pulled in to SLC Saturday afternoon. Having had no sleep the night before, since I slept with Brandon, Elena was nice enough to take the children swimming. It didn’t last too long due to Brandon’s over stimulated brain (can’t blame the three-year old being stuck in a car for two days). Elena grabbed KFC and then we all hit the hay.

Sunday was more eventful as we toured Temple Square. It has been a while since I’ve been in Salt Lake and though Temple Square has not changed much, the surrounding area has. I am always amazed at how much this whole area has grown, from SLC, Park City, Provo and Orem. I remember you use to be able to drive from Provo, or even Park City without seeing a whole lot of anything. Now as you drive, there isn’t any space in between the cities.

Temple Square was nice and we were able to get two different sisters to sign for Amornthep’s sake. I was really impressed with how much Amorn does know regarding the gospel. I’ve been quite worried that he hasn’t been able to pick up a lot since it is not always easy for us to sign during church. But, his comments to the sister missionaries indicated otherwise. I should have known because this little boy is truly brilliant. The sisters fell in love with him…who doesn’t…and kept saying they wanted to keep him. He is going to be a hit with the ladies when he gets older and quite the charmer. Elena has also fallen for his charms and anxious to paint him since she is quite a talented artist.

We were able to tour the conference center which I have never seen before. Unfortunately, the heat was pretty intense and when we were on the roof, Brandon kept saying it was too hot and he didn’t look so good. Thus, I got him out of the sun and was sensing he was getting heat stroke. I had to force him to drink, which he refused (a sign of heat exhaustion), but he was really starting to worry me. Therefore, we got in the car as soon as possible, cranked the AC, and off to Park City. Here is where it gets somewhat comical, though to Elena and I, quite stressful.

We arrived at our condo, which was on the third floor, and the place had no elevators. After hiking all luggage upstairs, not an easy task, I walked in and was hit with suffocating temperatures. I asked where the AC was and she said they did not have AC. NOPE, NOT DOING…so we hauled everything back down to the minivan. NO AIR CONDITIONING, IN UTAH, IN AUGUST? This was not acceptable, especially with Brandon having heat stroke/exhaustion. So, Elena and I are now stressed and both on our laptops frantically looking for a place to stay. Luckily, I was able to get us at the Doubletree Suites in Downtown SLC. Not bad as it did have a separate room from the main area that Elena and I can close off from the little ones. The breakfast was quite plentiful, warm and yummy. The kids enjoyed the pool, which was warm and inviting. Overall, I was pleased and it was not a bad price for all six of us due to our military discount.

Monday was vedge day. I wanted to make sure Brandon was completely over his heat issue before we ventured out again. We stayed in the hotel for most of the day, but early evening we ventured out to the Lion House Pantry and had dinner. I was VERY fortunate to take the children to meet some very dear friends that I have not seen in years. They were my second family when I attended BYU and were there for the ups and a few downs of my early 20s. It was great to see Mom and Dad Bruner and their two daughters, Emily and Autumn. They all looked and sounded very well, and it felt as if the years never separated us.

Tuesday we went to Provo/Orem to tour BYU. First we stopped at a food storage facility called Self Reliant, which sells Thrive freeze dried food. Elena had packed some of this food for our trip, which consisted of freeze dried strawberries, mangos, pineapples, yogurt pieces, etc. IT WAS VERY YUMMY and the kids wanted more. So, I promised them we would stop at their headquarters in American Fork so that I could pick up some more for our trip home. Their main lobby was full of samples for just about everything they sell and the kids just went to town. I was amazed at how yummy the freeze dried meat was and all the kids fell in love with the freeze dried sausage. But of course, I purchased a number of yummy treats, including freeze-dried ice cream sandwiches, and then off we went to Provo.

Unfortunately, the kids just didn’t seem to be quite intrigued as I had hoped. I showed them my old stomping grounds and took them up to the bluff under the “Y” so they could get a nice view. Hana did ask some general questions about college, but for the most part they were more interested in the ice cream I promised. So, after the quick tour we went to the BYU creamery.

We then went to Doterra headquarters to pick up our orders and I was able to chat with some nice girls in the front office. They asked me how I felt the oils were doing and I shared a few of my personal experiences. After we left we went to Sandy, where we had dinner and a nice visit with Phil’s cousin, Deborah Burris Neilson. She made a wonderful dinner and the kids had a great time playing with their chickens, climbing their playhouse and just being kids. Unfortunately, I started to get quite a headache and by the time we reached the hotel, I was too tired and in too much pain to do anything else. Elena took the kids swimming while I bathed myself in oils and tried to get relief. It did come eventually

Wednesday, due to my previous heat exhaustion, we stayed at the hotel again to vedge. Elena ended up taking the children swimming twice and also did the girls nails and such. I think Elena liked the quiet time as well. Later that evening I went to a meeting in West Valley where a Nurse Practitioner presented on Candida. It was very intriguing and I was able to speak with her one-on-one regarding MaeLynn and her Eczema condition. She felt that she was detoxing and that due to her age and the fact that her liver and kidneys may not be able to handle the overload, that her poor skin was getting quite a dose of toxic waste. As the Candida dies, it lets off toxins in abundance and if we are not taking a lot of fiber and probiotics, our bodies have severe reactions. Thus, this explains MaeLynn’s poor circumstance. Later that evening I contacted WrayBeth to share this information. However, she told me that she started to see her skin getting better and that she also switched from Castor Oil back to the Coconut Oil. So, hopefully we can get this under control.

Thursday we went to the Gateway Mall where the children enjoyed playing at the Children’s Museum. Elena and I enjoyed the store called Betty Paige and I was able to pick up a cute sailor dress. We ate at a Thai restaurant and then went to the hotel to await the arrival of another dear friend and his family, Ken Limb and his wife Katie and their children Joshua and Janae. They arrived around six and we all went swimming. We had a grand time and I thoroughly enjoyed the ability to catch up with so many friends and family during our stay.

Today we started for home and currently in Boise once again at with Elena’s relatives. We will arrive home tomorrow and I know we will all be very excited to finally sleep in our own beds, minus Brandon who wants to swim some more. I think had I just rented another hotel room and let them swim, they would have been just as happy. All in all, though hectic, hot and busy, it was a nice week to get away, enjoy the company and bond.

Wednesday, August 8, 2012

BAD NEWS FOR MAELYNN


The day before we left for our SLC vacation, I took MaeLynn to Seattle Children’s Hospital for her audiology test. She was amazing and her tester was so impressed with her ability to stay on task, be consistent, and well behaved that she was very confident the test was extremely accurate (not bad for a two year old).

Unfortunately, the results showed that her BAHAs are not doing much good as she indicates a loss of moderate to severe. In many areas she came back worse than Amornthep before his cochlear implants. However, because her Cochleas do not indicate any damage, and she does hear normal in some ranges and frequencies (but these ranges and frequencies are in areas we normally don’t detect anyway), Seattle’s policy is not to do a cochlear implant. I asked her then what other choices we have to improve her hearing and she said the BAHA is her only option. But, unfortunately, it is already programmed at full capacity. It does give her a little more vibration to hear better, but compared to normal hearing and even what Amorn hears with his imploants, it is so subpar that it is practically nonexistent.

Thus, she said we just have to come to terms that manual language will be her only language (ASL). I have no problem with ASL because we use it every day, but what I do have a problem with is that she can’t hear a horn honk, or have any type of hearing awareness for safety sake. One of the things I told Seattle when they were fighting me to implant Amorn was that if he could hear a horn honk and it would save his life, then to me that would be success. That comment was what finally convinced them that my expectations were not unreasonable and they went forward with the implants.

In MaeLynn’s case, I asked her audiologist why the cochlear implant team feels that keeping normal hearing, even though it may be practically non-existent, is better than cochlear implants that can amplify one’s hearing to normal? This viewpoint makes no sense to me. She completely agreed with me and not being on the cochlear team, is frustrated with this policy. She said she was going to speak with the team and hope that since we are already a cochlear implant family, they may overlook their policy; however, I should not get my hopes up. She suggested I write a letter to the team explaining my case, but I personally think a phone call is in order.

Once again I must go to battle with Seattle. If she lived in a deaf community, I feel she really wouldn’t be disadvantaged. But, the fact remains she lives in a hearing world and, therefore, all her friends and associates will be hearing and very few will know sign language. At least Amornthep now has the choice to sign his whole life, or work on using his hearing and vocal communication with the aid of the cochlear devices. He is working really hard right now to speak as he desperately wants to talk with his friends at church and school. With MaeLyn, I fear she will feel left out with her peers because she will not have the choice to try to communicate with her hearing friends. She will only have sign as her communication and most everyone we know does not know sign language. I pray they will either let me know some other alternatives, or work with me to provide her the best possible outcome!