Decisions Decisions

We just have too much going on around here and we have had to make too many decisions lately... So, I am have decided that I am done making decisions and that is the last decision I am going to make. Okay, that lasted a grand total of 10 seconds. I have absolutely no desire to have a house built. Light fixtures - can, hanging, or ceiling mount? How many outlets on a wall? What kind of carpet? What color carpet? What sort of pile on the carpet? What paint color? Which of the 2400 shades of that color? Paper or plastic? Ooops - Earth Day is tomorrow - That really shouldn't be a question! Back to the point, one decision then leads to five other questions.

Yes, we are in the midst of renovating, but as of now we are in the midst of pursuing surgery for Ryan. As of Sunday, we made the decision to pursue Medpor surgery for Ryan's outer ear reconstruction. I made the initial phone call yesterday and have yet to receive a return phone call. We do not know much at this point except we believe that this is the best option for Ryan. If Ryan is a candidate for the inner ear reconstruction, then we will pursue a combined surgery in which two or three renowned doctors (one of which 'invented' the Medpor surgery) will assemble in one location (northern California) and perform both surgeries (inner and outer ear) in one very long surgery on one ear. We would return several months later for the second ear. Still lots of unknowns especially with regard to insurance coverage (if any), but we are moving forward and will see where this journey takes us. We know without a doubt that God brought this little boy into our lives for a reason and that He will take care of the details. He will guide us along the paths necessary to get Ryan where He wants him to achieve the purpose He has for Ryan's life!! I believe this wholeheartedly! Am I still a little scared and unsure? You betcha!!

Decisions Decisions

We just have too much going on around here and we have had to make too many decisions lately... So, I am have decided that I am done making decisions and that is the last decision I am going to make. Okay, that lasted a grand total of 10 seconds. I have absolutely no desire to have a house built. Light fixtures - can, hanging, or ceiling mount? How many outlets on a wall? What kind of carpet? What color carpet? What sort of pile on the carpet? What paint color? Which of the 2400 shades of that color? Paper or plastic? Ooops - Earth Day is tomorrow - That really shouldn't be a question! Back to the point, one decision then leads to five other questions.

Yes, we are in the midst of renovating, but as of now we are in the midst of pursuing surgery for Ryan. As of Sunday, we made the decision to pursue Medpor surgery for Ryan's outer ear reconstruction. I made the initial phone call yesterday and have yet to receive a return phone call. We do not know much at this point except we believe that this is the best option for Ryan. If Ryan is a candidate for the inner ear reconstruction, then we will pursue a combined surgery in which two or three renowned doctors (one of which 'invented' the Medpor surgery) will assemble in one location (northern California) and perform both surgeries (inner and outer ear) in one very long surgery on one ear. We would return several months later for the second ear. Still lots of unknowns especially with regard to insurance coverage (if any), but we are moving forward and will see where this journey takes us. We know without a doubt that God brought this little boy into our lives for a reason and that He will take care of the details. He will guide us along the paths necessary to get Ryan where He wants him to achieve the purpose He has for Ryan's life!! I believe this wholeheartedly! Am I still a little scared and unsure? You betcha!!

Note to Self...

When attaching another contraption to your child's head, you must warn the teacher!! :o) They were a little confused at school today and were unsure what to do about the FM system that plugs into his BAHA at school. When they asked Morgan about the 2nd BAHA, he threw up his hands and said he had no idea!

Today we went to Cincinnati Children's for Ryan's hearing evaluation. We had not been in 9 months - yikes! It took Ryan a few minutes to get acclimated to the whole stimuli/response process, but once he settled in he was ready to rock and roll!! He was not at all thrilled with the tight fitting earphones and let the audiologist and her assistance know they were not comfortable and that the whole procedure was taking way too long! I had no idea until I came out and looked at the clock that we had been in there for over an hour! Evidently, the audiologist has seen evidence to support that two BAHAs are making some significant differences for some of her patients. upposedly, the extra BAHA is helping some children better localize the sound and is helping them discriminate between some phonological sounds. A few weeks ago, I truly realized that although Ryan can hear my voice, he is unable to distinguish where it is coming from. He was wandering through the house trying to find me while calling my name. I was in Morgan's room hanging something up in his closet and asked Ryan what he needed. He began asking where I was - By the way, he was in his room right next to Morgan's room. So, I decided to play a little game with him and instructed him to follow my voice. Well, he was all over the house, upstairs and downstairs, trying to find me. I was completely shocked at his inability to find my location! So, when the audiologist asked me if we wanted to give it a try, I told her we open to trying it out and seeing what happens. This morning, Ryan wanted no part in wearing two BAHAs, but this afternoon opened up to the idea and actually requested it. It will be interesting to see if there will be a significant difference noticed here at home or at school. Not sure if we will proceed with a second one as we are still unsure as to the time line of the surgeries and exactly what route we are taking regarding surgery. The audiologist did feel fairly confident that even after the surgery that he will need a device for amplification as most children do even after the surgery. However, after the surgery he might be a candidate for a regular hearing aid as he would then have a middle ear and an outer ear to hook it around. Well, that is the update for now... Still more decisions to be made and lots of observing over the course of the next two weeks! So, how do you wear two BAHA's? Just like this... I hope he won't interfere with all the wireless technology out there as this little boy is wired!

Ryan's New Exercise Regimen

After 7 weeks, we were finally able to get back to speech therapy. The snow days all seemed to fall on the days we were scheduled for therapy and then last week Ryan was sick. It was great to get back to work. After talking more with the therapist, we believe that it is crucial that Ryan strengthen his tongue and jaw muscles and gain more control over them. We believe that this might help him with his sounds as so many of them are very lateral and sound so sloshy. When in a conversation, it becomes even worse as the conversation progresses as his muscles might be weakening So, we will be using a crazy straw to drink from, chew gum, eating Tootsie Rolls and Starbursts, encouraging him to eat with his mouth closed more often (he is really bad at smacking his food), and then sticking a raisin or peanut butter in the bottom pockets of his gums and getting him to retrieve it with his tongue. I do not know if this lack of strength and control is due to his diagnosis or due to the fact that he was not really eating table food prior to coming home. I am hopeful that this will help him and that we might begin seeing some progress in the weeks to come!

After 7 weeks, we were finally able to get back to speech therapy. The snow days all seemed to fall on the days we were scheduled for therapy and then last week Ryan was sick. It was great to get back to work. After talking more with the therapist, we believe that it is crucial that Ryan strengthen his tongue and jaw muscles and gain more control over them. We believe that this might help him with his sounds as so many of them are very lateral and sound so sloshy. When in a conversation, it becomes even worse as the conversation progresses as his muscles might be weakening So, we will be using a crazy straw to drink from, chew gum, eating Tootsie Rolls and Starbursts, encouraging him to eat with his mouth closed more often (he is really bad at smacking his food), and then sticking a raisin or peanut butter in the bottom pockets of his gums and getting him to retrieve it with his tongue. I do not know if this lack of strength and control is due to his diagnosis or due to the fact that he was not really eating table food prior to coming home. I am hopeful that this will help him and that we might begin seeing some progress in the weeks to come!

Running in Circles

There is no other word to explain it right now except frustration. Ryan's speech is coming along and he seems to be fairly intelligible the majority of the time. However, his listening skills and command of the language is a very different story. He has been tested recently and in many areas he is ahead of where he should be developmentally (by a year or two). Yet, we keep finding these gaps in his language. For example, he has a hard time using the pronouns he/she and his/her. His auditory memory skills seem to be behind as well. When reading a very simple two-three sentence "story" to him, he is not able to recall the information to answer a question. This leads to another area where he is experiencing a great deal of difficulty - questions. Just this morning while riding in the car, he was not being kind to his sister. So, once we got home I asked him "Are you ready to use kind words and come in and play or do you want to stay here until you are ready to be kind?" Well, what did he hear ... "stay here" That then led to a full on meltdown. Errr!!! A lot of times, it just doesn't connect and I have no clue what to do!! It seems like I am running in circles. We are doing so many things to foster his language and surround him with language. He has great role models, we read constantly to him, have a table with a book on tape at it, educational listening toys (TAG reading system - Leapster - etc), preschool environment, etc. In fact, he is so surrounded that he is beginning to try to read. I have not held him back from trying to do so , but have also done nothing to foster that as I know our main focus needs to be these other areas. I know those are two very different areas of language, but they are dependent upon one another. Thus, the frustration!! At this point, I need to do some online research and most importantly place it in the hands of God!!