So I've promised for months I would upload some videos of Faith, and now I finally can do it pretty easily (I think). Please see if you can view this and let me know if you have any problems. I took this video in May of her being VERY vocal with her Passy Muir Valve (PMV)on. The PMV is a one-way valve that forces Faith to exhale through her mouth instead of her trach. That means the air goes across her vocal cords and she is able to make sounds more easily than when the air goes out through her trach before it gets to the vocal cords (although for Faith anyway, she has been quite good at forcing air past her trach even without the valve, but this makes it much easier for her).
Wednesday, July 30, 2008
Wednesday, June 18, 2008
Dr's appointments and getting ready for Spain!
So we had 3 doctors appointment in the last week. The first was with a nurse at the pediatric surgeon's office for Faith's G-tube button which has had a sore (they call it a Granuloma) that has never healed all the way since the first surgery after she was born. The nurse changed her button to a longer one and treated the granuloma again with silver nitrate and sent us home with more silver nitrate to keep treating it for the 10th time. She did show me that I wasn't going as deep as she was or leaving it on there as long, so I'm hoping MAYBE this time we can finally be successful.
The second appointment was with Dr. Guarin, Faith's pulmonologist. She is my favorite doctor and very talkative with us. She took a mucus culture of what Faith coughed up (I guess it's the same as a throat culture for someone without a trach) and then talked to me about trying another prescription, Singulair, to see if that might finally knock out the secretions and morning cough/congestion Faith has struggled with off and on for months now. I had hoped to show off how Faith is able to breathe both in and out of her mouth now, but when Dr. Guarin went to listen to her lungs Faith became extremely upset and cried uncontrollably and signed "no" to her. So we had to give up on that.
The third appointment was this past Monday with the GI (gastrointestinal) doctor for a simple weight check. Two months ago Faith's weight had jumped from the 25th percentile to the 60th and they wanted to make sure it wasn't continuing at that rate. Well it was - she is now in the 75-95th percentile which made me really frustrated. I wish they had tracked her more closely before it got this high. Anyway, they want to lower her calorie intake from 1000 cals to 900. That's fine. I also plan to start trying to introduce to homemade blended food (if I can find the time to start doing it!) and Fred and I want to get her off her nighttime drip as she gets all tangled up in all her various tubes at night and there have been enough mishaps where something got disconnected and we find her in the morning sleeping in a soggy wet mess or it causes her pulse ox monitor to quit working and we have to deal with it in the middle of the night. No fun.
Today, Dr. Guarin called me back with the results from the culture she took last week, Faith has an "abundant" colonization of pseudomonas growing in her trachea. Not great news, but also not very serious. So she wants to take her off her humidifier at night and let her sleep with just the artificial nose (HME) on her trach, which is great news and she wants us to start another prescription for 2 weeks - a Tobi nebulizer treatment 2x/day. Luckily the nurses can do it while they are there, and Fred will only need to do it on Sundays (because I'll be in Spain).
Yes, I am off to Spain!!! I leave Saturday morning and I can't wait! Mom, Dad, Terry and Sonya arrived on Monday and Leslie, Steve and Ali arrived this morning (assuming no more cancellations due to weather). I will be there until July 2nd, and will get home on the 3rd, just in time to spend the 4th of July weekend at home with Fred and the kids. Wish me luck with the travel arrangements, I'm a little nervous about it all going smoothly! I'm not worried about Fred taking care of both kids at all, he's a pro at it now, plus he'll have extra help during the days from nurses and his parents who are coming to visit while I'm gone.
Will write again when I get home.
Love to all,
Robin
The second appointment was with Dr. Guarin, Faith's pulmonologist. She is my favorite doctor and very talkative with us. She took a mucus culture of what Faith coughed up (I guess it's the same as a throat culture for someone without a trach) and then talked to me about trying another prescription, Singulair, to see if that might finally knock out the secretions and morning cough/congestion Faith has struggled with off and on for months now. I had hoped to show off how Faith is able to breathe both in and out of her mouth now, but when Dr. Guarin went to listen to her lungs Faith became extremely upset and cried uncontrollably and signed "no" to her. So we had to give up on that.
The third appointment was this past Monday with the GI (gastrointestinal) doctor for a simple weight check. Two months ago Faith's weight had jumped from the 25th percentile to the 60th and they wanted to make sure it wasn't continuing at that rate. Well it was - she is now in the 75-95th percentile which made me really frustrated. I wish they had tracked her more closely before it got this high. Anyway, they want to lower her calorie intake from 1000 cals to 900. That's fine. I also plan to start trying to introduce to homemade blended food (if I can find the time to start doing it!) and Fred and I want to get her off her nighttime drip as she gets all tangled up in all her various tubes at night and there have been enough mishaps where something got disconnected and we find her in the morning sleeping in a soggy wet mess or it causes her pulse ox monitor to quit working and we have to deal with it in the middle of the night. No fun.
Today, Dr. Guarin called me back with the results from the culture she took last week, Faith has an "abundant" colonization of pseudomonas growing in her trachea. Not great news, but also not very serious. So she wants to take her off her humidifier at night and let her sleep with just the artificial nose (HME) on her trach, which is great news and she wants us to start another prescription for 2 weeks - a Tobi nebulizer treatment 2x/day. Luckily the nurses can do it while they are there, and Fred will only need to do it on Sundays (because I'll be in Spain).
Yes, I am off to Spain!!! I leave Saturday morning and I can't wait! Mom, Dad, Terry and Sonya arrived on Monday and Leslie, Steve and Ali arrived this morning (assuming no more cancellations due to weather). I will be there until July 2nd, and will get home on the 3rd, just in time to spend the 4th of July weekend at home with Fred and the kids. Wish me luck with the travel arrangements, I'm a little nervous about it all going smoothly! I'm not worried about Fred taking care of both kids at all, he's a pro at it now, plus he'll have extra help during the days from nurses and his parents who are coming to visit while I'm gone.
Will write again when I get home.
Love to all,
Robin
Saturday, May 24, 2008
Test
Picture:
Faith at Ryan's Graduation party. She's wearing the little sweater Grandma Kargoll made for her, so cute!
Wednesday, May 21, 2008
Faith's Baptism
On Saturday, May 17th, Faith was baptized at Pax Christi Catholic Church. It was very nice and we were honored to have both godparents present (Michael Ranieri, godfather and Vicki Bayol, godmother) plus Grandma and Grandpa Kargoll, Aunt Rose, cousin Emma, and Lauren, Ryan, Dana and Anthony of course. Faith wore Heather Bayol's christening gown and it was just beautiful on her, she looked like a little princess! I will post pictures very soon, I promise! Ryan and Lauren video taped it and once I get a chance to watch it I will see if I can get it posted too.
We had a wonderful weekend with everyone in town and many sweet cards that arrived from others that couldn't be here in person (yes, MiMi, you're card arrived withOUT postage!! :). Thank you all for your kindness.
All for now,
Love,
Robin and family
We had a wonderful weekend with everyone in town and many sweet cards that arrived from others that couldn't be here in person (yes, MiMi, you're card arrived withOUT postage!! :). Thank you all for your kindness.
All for now,
Love,
Robin and family
Friday, April 18, 2008
Toddler Group for DHH children
Faith got to go to the toddler group for deaf and hard of hearing (DHH) children on Wednesday this week that I mentioneded in my last entry. Kim, Faith's speech therapist, told me about the group since she knew I was hoping to find a playmate for Faith who also signs. The group is perfect for her. It is led by an audiologist and a speech language pathologist and includes some physical therapy time as well. It is a weekly group that meets for 2.5 hours of interactive signing, language, reading, gym, reading, singing and dancing. I am so excited to have Faith get this extra time with therapists and other kids with issues like hers. It is a parent-tot class and most of the time the parents are there to help out but stay in the background as much as possible. When the kids go to the PT room, there is a session for the parents to cover learning objectives.
I took the day off work so I could go the first time and I wish I could go all the time, but going forward, Lindsay (nurse) will go with her and Fred or I will come in near the end of the group for a few minutes to get an update and take them home. Faith loved the class and was only a little shy. She wasn't used to having to sit down while they had story time and stuff, but she did pretty good only getting up a few times. She got to do artwork and go to a tumbling room where she got to swing and slide and crawl through a tunnel. She seemed to have a lot of fun!
Another nice thing about this is that it is covered by Medicaid. I was annoyed that my insurance denied it and I plan to fight their decision, but at least in the meantime or if they still refuse, Medicaid will cover it.
Anthony had his annual check-up this week too, and was a very good sport when he had to get 5 shots. OUCH!!! Fred took him and I heard he cried a bit, but afterwards he got a treat from the doctor's office and McDonald's for lunch! And today, Anthony got to come hang out with me at the office for the afternoon since I didn't have any meetings. He mostly watched TV, but also had fun talking to my co-workers, especially Claire!
Oh, I finally got my video camera fixed, so I might actually try to get the video uploaded that I promised around Easter.
Have a great weekend!
Robin
I took the day off work so I could go the first time and I wish I could go all the time, but going forward, Lindsay (nurse) will go with her and Fred or I will come in near the end of the group for a few minutes to get an update and take them home. Faith loved the class and was only a little shy. She wasn't used to having to sit down while they had story time and stuff, but she did pretty good only getting up a few times. She got to do artwork and go to a tumbling room where she got to swing and slide and crawl through a tunnel. She seemed to have a lot of fun!
Another nice thing about this is that it is covered by Medicaid. I was annoyed that my insurance denied it and I plan to fight their decision, but at least in the meantime or if they still refuse, Medicaid will cover it.
Anthony had his annual check-up this week too, and was a very good sport when he had to get 5 shots. OUCH!!! Fred took him and I heard he cried a bit, but afterwards he got a treat from the doctor's office and McDonald's for lunch! And today, Anthony got to come hang out with me at the office for the afternoon since I didn't have any meetings. He mostly watched TV, but also had fun talking to my co-workers, especially Claire!
Oh, I finally got my video camera fixed, so I might actually try to get the video uploaded that I promised around Easter.
Have a great weekend!
Robin
Friday, April 11, 2008
Sign class and other stuff
Hi everyone, hope you all are doing well and that spring is beginning to take hold - it was for us and then we had a big snow storm yesterday, but it's supposed to be in the 60s this weekend and 70s next week! Things are just chugging along for us; we had a busy week including having our signing class video taped to be put into a video for new families!
We got a new sign language instructor about a month ago (our previous teacher, Teresa, moved out of the area in November and we didn't have a new instructor till March). Our new instructor is Janice and she is deaf, which is nice for us in two ways - one, it exposes us to the deaf world more because we really notice how not being able to hear anything affects our communication with her and how much sound we don't even realize we pay attention to all the time that she can't hear. The other more obvious reason is that it forces us to sign if we want to communicate with her, and motivates me at least to try to sign more instead of always falling back on speaking. We were nervous about having a deaf instructor at first, but Janice is very good and it is going well. So the program that provides this early intervention for us wanted to video tape our class, and 10 other families' classes too, to make a short video to give to new families who would benefit from the service. Two women brought the camera and light and set up and video taped the whole class; they said they would send us the raw video before they edit it down to about a minute. Anthony of course was more interested in the camera than the class and one of the ladies kept him entertained while we went ahead with our class. Anthony ended up inviting her up to his room and "entertained" her with his toys and videos. At one point we heard him blasting one of his Little People videos and felt so bad for her! It took me a minute to realize Janice had no idea why we all started laughing and were distracted from class, which is exactly what I mean about taking for granted all the noise we hear all the time.
We always talk about how fast Faith is learning so many new things, but I wanted to share how much the rest of us are learning too. Fred told me just the other day that he now knows over 100 signs (off a list one of the nurses compiled of all the words Faith's speech pathologist, Kim, has been working with her on) and he is able to finger spell words during our sign language class. This is so hard for Fred and something he has had to push way beyond his comfort zone to do. I am so impressed with him. Then there is Dana, she is really amazing at this! For her, finger spelling is a breeze! She finger spells as fast as young kids today text message on their cell phones (yeah, she's a whiz at that too!!). The thing that is so impressive about Dana doing this is that she only makes it to our signing class once a month (we meet twice a month usually) if that, and she never misses a beat!
On another note, Kim sent me a flyer for a toddler group for deaf and hard of hearing (DHH) children organized by the Denver Children's Hospital. I've been wanting for Faith to have some playmates who also sign so this is perfect. The groups meets near our house once a week and I'm planning to take Faith next Wednesday and observe how the group works and how she likes it. If it goes well we will enroll her in the group. Fred will probably just drop Faith and Lindsey (her nurse) off each week and then either Fred or I will pick them up so we can get a progress update. I'm really excited to check it out.
Have a great weekend!
Robin
We got a new sign language instructor about a month ago (our previous teacher, Teresa, moved out of the area in November and we didn't have a new instructor till March). Our new instructor is Janice and she is deaf, which is nice for us in two ways - one, it exposes us to the deaf world more because we really notice how not being able to hear anything affects our communication with her and how much sound we don't even realize we pay attention to all the time that she can't hear. The other more obvious reason is that it forces us to sign if we want to communicate with her, and motivates me at least to try to sign more instead of always falling back on speaking. We were nervous about having a deaf instructor at first, but Janice is very good and it is going well. So the program that provides this early intervention for us wanted to video tape our class, and 10 other families' classes too, to make a short video to give to new families who would benefit from the service. Two women brought the camera and light and set up and video taped the whole class; they said they would send us the raw video before they edit it down to about a minute. Anthony of course was more interested in the camera than the class and one of the ladies kept him entertained while we went ahead with our class. Anthony ended up inviting her up to his room and "entertained" her with his toys and videos. At one point we heard him blasting one of his Little People videos and felt so bad for her! It took me a minute to realize Janice had no idea why we all started laughing and were distracted from class, which is exactly what I mean about taking for granted all the noise we hear all the time.
We always talk about how fast Faith is learning so many new things, but I wanted to share how much the rest of us are learning too. Fred told me just the other day that he now knows over 100 signs (off a list one of the nurses compiled of all the words Faith's speech pathologist, Kim, has been working with her on) and he is able to finger spell words during our sign language class. This is so hard for Fred and something he has had to push way beyond his comfort zone to do. I am so impressed with him. Then there is Dana, she is really amazing at this! For her, finger spelling is a breeze! She finger spells as fast as young kids today text message on their cell phones (yeah, she's a whiz at that too!!). The thing that is so impressive about Dana doing this is that she only makes it to our signing class once a month (we meet twice a month usually) if that, and she never misses a beat!
On another note, Kim sent me a flyer for a toddler group for deaf and hard of hearing (DHH) children organized by the Denver Children's Hospital. I've been wanting for Faith to have some playmates who also sign so this is perfect. The groups meets near our house once a week and I'm planning to take Faith next Wednesday and observe how the group works and how she likes it. If it goes well we will enroll her in the group. Fred will probably just drop Faith and Lindsey (her nurse) off each week and then either Fred or I will pick them up so we can get a progress update. I'm really excited to check it out.
Have a great weekend!
Robin
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