Talen Laughing at "Over the Hedge"

Now I Can - Day 5 - Round 2

Yesterday after therapy, we drove back up to Salt Lake because we had another appointment this morning at Primary's. This time we took Talen to the Sleep Clinic because he occasionally holds his breath while he is sleeping and I want to get him looked at just to make sure everything is all right. The doctor was so nice!! He said that holding his breath could be a normal part of growing up, but just to be sure we did another blood test. If that test comes back good, then we have decided to just wait and see if he outgrows it. If the test comes back negative, then we will have to put him in a sleep study to see if he has (I don't remember the official name of it) a breathing disorder while he sleeps. If he has the disorder there are two ways to get him oxygen while he sleeps - the first is to use a mask. The doctor said that the mask would probably not work for Talen because he continually has fluid in the back of his throat and that could get pushed down into his lungs, which would just cause more problems. So the second option would be to have him get a trach. This would bypass the fluids in his throat and is the better of the two options. However, I do not want him to get a trach. The poor little thing already has enough to worry about with his g-tube, so we are praying that the initial test comes back good and he outgrows the breath holding. So, cross your fingers for us!!!! After our informative visit, we headed back south for therapy. We got there a little early so I sat in the family room and gave him his bottle. Of course, he fell asleep, so he was not happy for the first 20 minutes or so that they were working on him. But, he eventually got over it and was much more cooperative. So, I got in trouble for taking too short of videos. So, here are several that I took today. They aren't too exciting, but I caught a couple cute smiles!

Now I Can - Day 4 - Round 2

Last night after therapy we drove to SLC to stay with my Aunt Patsy and Uncle Mickey. They live just down the road from Primary Children's and since we had an appointment there this morning, I figured that it would be nice to stay close. We got to Primary's at 9 and got in to see Dr. Sakonju (Neurologist) at about 9:30. She is just flabergasted that she cannot figure out what is wrong with Talen. She took videos and bloodwork that she is considering sending to John Hopkins to see if anyone there has any ideas on what is going on with him. We figured that the more eyes the better. She also wants to put in on some more medication (Trihexyphenidyl). I think this is supposed to help his tone and help him to gain some weight. After waiting to get the blood drawn and the visit with the doctor, we raced back to Provo just in time for his session of therapy. Therapy today was pretty good. He was tired, but didn't complain too much. Sergio decided it would be good to use the kenisio tape again. So, Talen has turned into our little smurf again!
Talen also got a chance to be in the spider cage. Nacole said that if they would have tried to put him in the spider cage on his first visit, he would never have been able to do it. He has good enough posture now that they can put him in the cage. Yea!! He was a little wiggley at first, but still worked really hard!!

Now I Can - Day 3 - Round 2

Talen slept so good last night that I would have thought that we were at home in our own beds! Thanks so much to Bonnie and her family for making us feel so at home and welcome!! We appreciate it more than you could ever know!!! Today at therapy, Talen did so good. I hardly even heard a peep out of him. So I went in to check on him to see how it was going and I discovered why he was being so quiet. He fell asleep!! I couldn't believe that he was asleep after he had had such a good night. Sergio said that even with him being asleep, his body was still working. Normally when kids go to sleep during therapy, their body gets more floppy, but Talen's didn't so he could tell that his body is still getting the input that it needs. HOORAY!!!

Now I Can - Day 2 - Round 2

Last night we spent the night at Bonnie (Willie) Peterson's house. Talen must have been a little sore or just unfamiliar with his surroundings because he did not sleep very well at all. Hopefully tomorrow night will be much better. At therapy today, you could tell that he was very tired because he seemed to whine every time they switched exercises. I talked to Sergio a bit and he said that Talen is doing really well and this time he is going to focus more specifically on head control. We really feel that if he can get his head under control the rest of his body will come fairly quickly. While Talen had on the neuro-suit, his control was amazing. I wish that he looked as good with it off as he does with it on - hopefully someday, someday soon!! The rest of his session today was good, with little bouts of crying here and there.

Now I Can - Day 1 - Round 2

So after the long drive from St. George to Provo, we finally made it here. We arrived a little early so I took Talen into the Family room to have a bottle before he started. When we walked in, I was surprised to see our very own larger-than-life Talen Myrle hanging on the wall. And it is such a good picture!! (thanks Audra!)

After the bottle Talen looked around a bit and he had this look on his face of "I think I remember this place." Then he heard Sergio talking in the other room and this huge smile spread across his face. Talen just loves Sergio. I am very grateful for this because it makes forcing him to endure 4 hours of therapy a day much easier.
Our goals for this trip are mostly head control, be we also want to focus on his upper extremities. Sergio got back to the grind with stretching and working out his muscles. Talen did so good and never even made a peep until the last 45 minutes. I think he was more tired than anything, but after he got the neuro-suit on and did some more stretches, he had just had enough for the day. Hopefully tomorrow he will really get a good solid 4 hour workout in. Poor Boy!

Easter

Easter this year was pretty busy. We decided to do the Easter thing with the Vaughn's on Saturday. So we went over to Robin's and the kids had a little treasure hunt to find their baskets. They really seemed to like doing it that way. Talen got lots of clothes, candy, and the movie "Astro Boy". KiKi got clothes, candy, and toys. After the kids treasure hunt, Robin did the annual adult money Easter hunt. I think that I made out the best. The total of my find was $50, Justin had $44, Kara (family friend) had $44, Jay was $30 something, and I believe it went down from there. After our hunt, we did a mini egg hunt for the grand kids. I think Kennedy found the most eggs, but after some convincing, she shared some of hers with the little kids that didn't find as many. Once that was done, all the men took off to go to the Priesthood Session of General Conference and the girls sat around visiting.
We spent Sunday with my side of the family. After General Conference, we went over to Cathy's for another egg hunt and dinner. Talen even got to participate this year. In fact, I think that he really enjoyed it, even if it was a little windy. As usual, dinner was yummy (thanks Brian) and after wards we just sat around and visited. This Easter was so easy for us because everyone else took care of everything for us. Why can't all holidays be like that?????