Kyla has had a good couple of days with her strength level. Her eyes are open a little wider than in the past few weeks. Her eye turn is less as well. This is a praise as our little Kyla is returning to form. She had a blast tonight dancing at church to the country music of the Faith Baptist Church Parking Lot Pickers. We all enjoyed the delicious homemade ice cream.
nc
Sunday, July 27, 2008
Sunday Morning
Hey friends. Here's some pictures of the girls this morning before church and one of Laura playing dress up. Thought the blog family might enjoy them. They were so cute together. We put the girls in the same room last week. It has been an adventure, but really fun... Laura gave up pappy ( pacifier) and being in the same room has made that transition easier!
Sabrina
Sabrina
Wednesday, July 23, 2008
Still trying to figure this kid out
Kyla still is not back to the Kyla of old. Her eyes are very droopy and her right eye continues to consistently turn out. We have stopped giving her the Albuterol to see if that will help, but that hasn't made a difference. It's so frustrating to see what messing with her medication has done for her.
Monday, July 21, 2008
Good Morning
Kyla had a pretty rough "eye" day yesterday. You ask her about it and she says, "I see fine, mom." Good attitude, that kid. :) Having a little breakfast with Jesus this morning and found this verse in The Message:
Psalm 36:5-6
God's love is meteoric,
his loyalty astronomic,
His purpose titantic,
his verdicts oceanic.
Yet in his largeness
nothing gets lost;
Not a man, not a mouse,
slips through the cracks.
Powerful stuff!
Sabrina
Psalm 36:5-6
God's love is meteoric,
his loyalty astronomic,
His purpose titantic,
his verdicts oceanic.
Yet in his largeness
nothing gets lost;
Not a man, not a mouse,
slips through the cracks.
Powerful stuff!
Sabrina
Saturday, July 19, 2008
Party Time
This is a weekend of birthday parties. Yesterday, Kyla went to a very special luncheon for her friend Riley's birthday. They played dress-up and had a tea party. Kyla had a great time. Last night, we went to Riley's party and had a blast. Today, Kyla goes to a party for a friend from school.
Kyla has now been back on 5 mL of Mestinon for a little over a week. She is doing well, but her eye trouble continues. She's pretty much back to normal. Her bladder problems are kind of hard to track. For the two weeks we were on the lower dose, her urgency to go to the bathroom was just like it always has been. Her incontinence seemed to be a little better. We noticed yesterday that her incontinence was pretty bad, so that is something we have to consider going forward.
Since we are generally vague on what is a high dose of Mestinon and what dangers come along with a higher dose, I called the drug company that makes Mestinon to see if there are any dangers they know of. I have read the label on the bottle several times and couldn't find a whole lot about overdosage. All I could find is that there is a point where the Mestinon will start to make the patient weaker instead of stronger. When I called to talk to the drug company, I got to talk to one of their pharmacists. She told me exactly what the bottle says, which is that if we give our child too much Mestinon, she will get weaker. She also told me that each person responds differently to Mestinon, therefore the company doesn't have a specific dosage recommendation. She says that we need to follow the directions of our doctor and work with our doctor to find the right dosage for Kyla. She did say that side effects, such as nausea, vomitting, and stomach cramps, will increase with higher doses. Kyla doesn't seem to be affected by those, however. I forgot to ask her about Kyla's bladder problems and if Mestinon is known to cause bladder problems.
As for the Albuterol, I still do not see any improvements from taking it. We will probably try to add another dose in the near future to see if there are any improvements. Dr. Engel told us to try to get her up to 2 mg, 3 times a day and we're currently at 2 mg, 2 times a day. It doesn't seem to make her as shaky anymore, so adding a dose shouldn't be too hard. We'll continue to update her progress on the Albuterol.
nc
Kyla has now been back on 5 mL of Mestinon for a little over a week. She is doing well, but her eye trouble continues. She's pretty much back to normal. Her bladder problems are kind of hard to track. For the two weeks we were on the lower dose, her urgency to go to the bathroom was just like it always has been. Her incontinence seemed to be a little better. We noticed yesterday that her incontinence was pretty bad, so that is something we have to consider going forward.
Since we are generally vague on what is a high dose of Mestinon and what dangers come along with a higher dose, I called the drug company that makes Mestinon to see if there are any dangers they know of. I have read the label on the bottle several times and couldn't find a whole lot about overdosage. All I could find is that there is a point where the Mestinon will start to make the patient weaker instead of stronger. When I called to talk to the drug company, I got to talk to one of their pharmacists. She told me exactly what the bottle says, which is that if we give our child too much Mestinon, she will get weaker. She also told me that each person responds differently to Mestinon, therefore the company doesn't have a specific dosage recommendation. She says that we need to follow the directions of our doctor and work with our doctor to find the right dosage for Kyla. She did say that side effects, such as nausea, vomitting, and stomach cramps, will increase with higher doses. Kyla doesn't seem to be affected by those, however. I forgot to ask her about Kyla's bladder problems and if Mestinon is known to cause bladder problems.
As for the Albuterol, I still do not see any improvements from taking it. We will probably try to add another dose in the near future to see if there are any improvements. Dr. Engel told us to try to get her up to 2 mg, 3 times a day and we're currently at 2 mg, 2 times a day. It doesn't seem to make her as shaky anymore, so adding a dose shouldn't be too hard. We'll continue to update her progress on the Albuterol.
nc
Sunday, July 13, 2008
San Antonio Vacation
I took off Thursday through Saturday and we took a little vacation down to San Antonio. We went to the Alamo and Riverwalk on Thursday and went to Sea World on Friday and Saturday. We all had a really good time. We met our friends Steve and Michelle Wood with their two girls Riley and Reese in San Antonio on Thursday and had a great time with them. All of the girls really enjoyed Sea World and getting to see all the shows together.
While on the drive down to San Antonio, Sabrina called Dr. Engel's office at Mayo. She told Dr. Engel's assistant that Kyla has been significantly weaker since we lowered her dose of Mestinon while at the Mayo Clinic. Dr. Engel returned the phone call and told Sabrina to raise the dosage back to what it was before Mayo. Sabrina then told him that he and Dr. Selcen had lowered the dose because of fear of overmedication. He said that it is logical to conclude that since her body responded positively to the higher dose, it is dose that she needs. So, we have raised her back to 5 mL 3-4 times a day. It's kind of hard to tell how she's doing because we've been pushing her much harder than usual since the increase. She was out in the heat a good bit of Thursday at the Alamo and Riverwalk. The sun always zaps her strength. Friday, we were at Sea World from 10 am until 7 pm, and on Saturday from 9:30 am until 2 pm. Needless to say, Kyla was weak all weekend, especially in her eyes. She had a great attitude despite those eye issues. In fact, she had a blast and did really, really well. We took a stroller for Laura and Kyla rode in it a little on Friday evening and then a little bit on Saturday, but she walked most of the day both days and didn't whine much about it. I would guess that the higher Mestinon dose was helpful, but I don't really know for sure. Today, she is recovering very well.
Check out some pictures from our trip. We had a blast!!
nc
While on the drive down to San Antonio, Sabrina called Dr. Engel's office at Mayo. She told Dr. Engel's assistant that Kyla has been significantly weaker since we lowered her dose of Mestinon while at the Mayo Clinic. Dr. Engel returned the phone call and told Sabrina to raise the dosage back to what it was before Mayo. Sabrina then told him that he and Dr. Selcen had lowered the dose because of fear of overmedication. He said that it is logical to conclude that since her body responded positively to the higher dose, it is dose that she needs. So, we have raised her back to 5 mL 3-4 times a day. It's kind of hard to tell how she's doing because we've been pushing her much harder than usual since the increase. She was out in the heat a good bit of Thursday at the Alamo and Riverwalk. The sun always zaps her strength. Friday, we were at Sea World from 10 am until 7 pm, and on Saturday from 9:30 am until 2 pm. Needless to say, Kyla was weak all weekend, especially in her eyes. She had a great attitude despite those eye issues. In fact, she had a blast and did really, really well. We took a stroller for Laura and Kyla rode in it a little on Friday evening and then a little bit on Saturday, but she walked most of the day both days and didn't whine much about it. I would guess that the higher Mestinon dose was helpful, but I don't really know for sure. Today, she is recovering very well.
Check out some pictures from our trip. We had a blast!!
nc
Wednesday, July 9, 2008
Medicine Update
Just a quick update on Kyla and her medication. Kyla seems to be less shaky after taking the Albuterol everyday, so we have upped her dosage to 2 mg at 8 am and 2 mg at noon. We still have no idea if this med. is helping, but I don't think it's hurting anything. Just when I thought she was getting a little stronger, her eyes were absolutely terrible this afternoon. Tonight, I was talking to her in our church gym and her right eye was turned way out. I could only see the white of her eye.
nc
nc
A Mini-Vacation
We are gearing up for a little trip down to San Antonio. We'll leave tomorrow morning, drive to San Antonio, and check out the Alamo and the Riverwalk. Friday and Saturday, we are going to Sea World. Kyla is looking forward to the trip and she can't wait to see Shamu.
Kyla is a little stronger the past couple of days, but is still only about 80% of what she was before the Mayo trip. Her eyes are still droopy and her right eye continues to turn out consistently. We are waiting to hear from Dr. Packwood (Opthalmologist) after he speaks with the Mayo doctors about Kyla's significant decrease in strength.
nc
Kyla is a little stronger the past couple of days, but is still only about 80% of what she was before the Mayo trip. Her eyes are still droopy and her right eye continues to turn out consistently. We are waiting to hear from Dr. Packwood (Opthalmologist) after he speaks with the Mayo doctors about Kyla's significant decrease in strength.
nc
Saturday, July 5, 2008
Fun on the Fourth
We took the girls to Castaway Cove Water Park yesterday. They both had a blast. Kyla especially had a lot of fun. She rode the rides and made it through
the day with no problem. She is definitely weaker than she used to be, but her attitude is great and she just keeps on plodding along. She loved the new ride at Castaway Cove, which is called the Cliffhanger.Last night, we went to Freedom Fest at Shepard Air Force Base just north of Wichita Falls. We listened to Tops In Blue and then watched the fireworks. Once again, Kyla did fine and enjoyed the fireworks.
nc
Friday, July 4, 2008
Thursday, July 3, 2008
It's in the eyes
We took Kyla to the eye dr. today- all day! It was a crazy trip. Late appointment and bad traffic. Anyway, he confirmed for us what Neely and I feared; her eyes are much weaker on the lower dose of Mestinon. Her strabismus is worse. Eye Dr. will contact Neuro. Dr. and see what needs to be done. If we can't adjust the mestinon, then we will need to work on the glasses prescription and maybe start patching her eye again...bummer. Eye Dr.'s comment was something like the difference is "significant."
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