Sunday, December 23, 2012
Monday, December 3, 2012
Now to my update on the Medical Good Faith Act...We were able to get a bill created in both the Michigan State House and Senate. It is during a lame duck session and the agenda is already set so we won't make it to the floor for a vote, but I am confident that we will get it reintroduced in both chambers during the next session. I have already been asked to follow up in mid-January. I am looking forward to this and believe we will succeed. I have attached the first page of the House bill. I would do more, but seem to have run out of space with this lovely blog space.
This bill will require hospitals and doctors to reveal their medical futility policies so parents can make informed decisions about where to receive treatment. This will help those of us who have been lied to about available treatments for our children because a hospital or doctor simply decided on its own not to offer medical help because the treatment has been deemed futile. Thanks, but we can decide that on our own.
Thursday, September 20, 2012
Two of the T18 families that we sent to U of M were there so it was like a T18 convention at Mott Children's Hospital. Mylah is still there recovering well from heart surgery, and Ameir was life-flighted there last night with rsv/pneumonia. On a very positive note, he seems to be a little better and slowly on his way to recovery. Please keep both of these very little ones in your prayers.
Faith is having a colonoscopy this morning. Depending on what they find, we may have exploratory surgery as well. We are praying for them to find the source of the bleeding. We do have a concern about anesthesia because her hemoglobin level is only 8.5 and usually runs over 11. Not having the full blood level is troubling when facing surgery.
Tuesday, September 18, 2012
Faith's stool was different than the previous times we had blood in her stool. Last time was way back in February - it is sad when 6-7 months seems like a long time to stay out of the PICU. So her stool was bloody, but also had some mucus in it which was also bloody. I changed her diaper right before she left and it looked to be almost pure blood with some mucus in it.
Other than being sick a couple of times Faith has been doing well since our last February blood issue which resolved and had not come back until now. The only thing we did differently was to give her some pasteurized cider. Who knows? We will try to keep you updated and appreciate any and all prayers.
Wednesday, July 18, 2012
|SPLASH!! SPLASH!! SPLASH!!!|
|Faith loves to play with her big sister Hope.|
|And to think...it is only 100 degrees...just fine as long as she has water|
Progress is being made on our attempt to pass our Medical Good Faith bill in Michigan requiring doctors and hospitals to reveal their medical futility policies. We have a republican in the Michigan state house who is submitting the bill and a democrat in the Michigan senate who is willing to co-sponsor a bill. I pray God blesses our work and those who are willing to help us.
Sunday, July 1, 2012
Here Faith is learning to walk in her new Crocodile Gait Trainer. After the news article in the Detroit Free Press back in February, I received a call from a man in Canada who read the article. We talked for about an hour and shared a number of things with each other. He has a 10 year old daughter with Full Trisomy 13 whom he taught to walk. What was really cool to learn is that she walks unaided...she doesn't even use a walker anymore. Of course I wanted to know how he did it so he told me. He suggested that we get a very light weight aluminum walker so Faith would have to learn to control it and walk more normally. He said heavy walkers cause the user to over compensate and they have a harder time learning to walk properly. He showed me online that Crocodile is a good one so we asked the good folks at U of M to help us get one. They were great, and we got the walker about 2 weeks ago. You can see how much Faith loves to walk. Now it is a matter of hard work - we need to work with here over and over and over and over and over again so she can learn.
Overall Faith has been doing very well. We really need to start on a real food blender diet to see if we can get her past some of the gas issues which is really her biggest problem currently. We are still rejoicing that the bleeding has ended and not come back since February.
Friday, May 25, 2012
I know...I know...it has been ages since I posted anything about Faith. I have been crazy busy and have had very little extra time, but this is good because Faith hasn't totally dominated our time which means she's feeling well. She still has feeding and digestive issues, but they are so much better than they had been. In fact, we have been letting her sleep without the bipap which is nice for her and us. Faith continues to feel better, and I hope you enjoy this video. She entertains her siblings, but you can tell she enjoys music. This video is from the OHMI (Oakland Homeschool Music) concert the other night.
I am also working on an idea for a Michigan Law. I would like to get a law passed to require hospitals to reveal their medical futility policies. I am sure they won't like it, but this is desparately needed. I am not trying to force a change in their policies, but people should have the right to know what service to expect from a hospital. Obviously we have had problems with this, but another Trisomy 18 child born in our area not too long ago had a problem. The doctor told the mother during labor that he would not resuscitate the child if she needed it. This is pathetic...tell us upfront so we can go somewhere else. I think the free market will correct this problem just force them to be transparent.
I have been able to get the ear of our lieutenant governor and I will keep in the ear of my representatives because this just makes sense and will save lives. I think that I have come up with a good name for it. You have to tell stories the right way so I would like to call it the Medical Good Faith Act. We can tie Faith's face to it so there is a real person attached, and we are simply asking them to act in good faith. Any support from MI residents would be appreciated.
Monday, April 9, 2012
|Here Faith is opening her Easter basket with her sister Hope. She likes the little Donald Duck with the blue ears.|
|Sibling photo at Nana's house after Easter service. Top left - Elijah then Gideon, Faith in the Center with Grace and Hope.|
|The whole family in our shades of blue...it was a lovely day.|
|Hanging out at home and enjoying the evening.|
The last week or so, we have been letting Faith sleep through the night without using her bipap for breathing assistance. She has done well and seems to sleep better. She needs the bipap when she is sick and then it helps her sleep better to get over sickness. This is a happy time to turn off the bipap and get rid of the noise at night.
Wednesday, April 4, 2012
After having Rick Santorum be the only other Trisomy parent we had met, this past week we met 2 other Trisomy parents. We had the privilege to meet Mina, Juwan, and Mylah, and Jesi got to meet Kathleen McCartney and her son. Grace was able to babysit for her. So it was a busy week.
Overall Faith continues to do well, and her feeding issues have improved, but it is still not easy feeding...just easier than it was.
Sunday, April 1, 2012
This is a video put together by Jill DelSignore who is another parent of a Trisomy child. It includes photos of children from all over including Faith. She is in it toward the end several times. These photos are great, and I hope you enjoy it.
Friday, March 23, 2012
|Here is Molly with her dad before the surgery.|
|This is Molly after surgery and still intubated.|
|This is a bit blurry, but you can see the incision below her ear near the back of her jaw. This is where the distractor is turned each day to allow the device to move her jaw further out.|
Saturday, March 17, 2012
|Faith is sleeping in this morning.|
|This is how cute she is though when sleeping well.|
One of the other Trisomy 18 kids, Molly who we have met through the web, just had jaw distraction surgery and appears to be doing very well. I am very interested to watch her progression because I think it can make such a difference in these children.
Thursday, March 8, 2012
Jesi was interviewed today by Janet Mefferd on her national Christian radio program. This program is syndicated by Salem Communications, the company that I work for. She is out of Dallas and broadcasts on stations across the country. It was live during the first hour of her show at 1:30pm central time and was broadcast on Faith Talk 1500, my station, at 5:30pm. The first thing you will hear is a promo that ran overnight and throughout the day on Faith Talk 1500 in Detroit. This promo was also sent to her stations across the country. Then the interview plays. Janet also promoted her interview with Jesi on the front page of her website.
On a totally separate note, Faith has been feeling much better. When we were doing a high calorie diet, we gave her coconut oil or olive oil. Jesi decided to include olive oil in her feedings again. She started very recently and since then Faith seems to have much easier bowel movements. In fact, her energy level has increased dramatically as well. She was jumping up and down in her stander the other night. I should have gotten video of her. We will see if this continues to work. The oil never had this effect before, but with the different food, maybe the oil is providing a new result. We will keep a close watch, but it will make me wish that we had given her the oil sooner if it continues to help her bowels work better.
Sunday, March 4, 2012
Rick Santorum spoke last night in my home town of Lima, Ohio. When we learned about this, we contacted the Lima News to see if they would be interested in our story. We interviewed with Dave Trinko, New Media Editor, Wednesday evening and the story is on page 2 of the Lima News today, the Sunday edition of the paper. The lead story is obviously the visit by Rick Santorum followed by our story with the newest pictures of Faith, the Smith clan, and Rick Santorum from a week ago when he was near us here in Michigan. Jesi noticed that Rick looked so much happier in the Lima News photo with his wife beside him. Not that he was unhappy, but it must get a bit lonely even with all those people around him...seems obvious that he adores his wife. Ohio's primary is Tuesday so this is good timing. Here are links to the story.
Thursday, March 1, 2012
Please pray for Faith. Also I will be sharing some upcoming media coverage...our story continues to grow with some help from our pushing.
Sunday, February 26, 2012
|Smith Family Photo with Rick Santorum|
|Grace in background|
|Meeting the President (titled by photographer)|
|Taking It On The Chin (title by photographer)|
|THE SMILE (title by photographer)|
|Close up of Faith and Rick Santorum|
Thanks for the privilege of sharing these with you. For my fellow photographer and I, it was the highlight of the day.
God has given you a very special daughter, but I saw a beautiful example of love in your other children's joy in their sister's moment in the spotlight.
God bless you,
Faith, Jesi, and I had obviously met Rick Santorum previously, but I think the rest of our children will always remember this opportunity fondly.
Saturday, February 25, 2012
Once again, he had an article that he wanted us to read so he had his campaign aides find his IPad. The Time Magazine article is called Rick Santorum's Inconvenient Truths by Joe Klein. It is subscriber access, but here is the link http://www.time.com/time/magazine/article/0,9171,2107519,00.html
His aide read the article to us which talked about how Rick's stand is inconvenient for many by raising the standard. Klein points out too many parents are not willing to sacrifice for their children. This is a liberal writer, and Rick was quite moved by the article. He said the article made him cry and as he described the article to us, tears began to well up in his eyes. RON PAUL...Rick Santorum is NO fake, but I'm beginning to think you are. I have little patience for this garbage.
I am waiting on pictures because the flash started and cameras rolled as soon as Rick picked Faith up. We will post the pictures when we have them.
Thursday, February 23, 2012
Faith has not had any bleeding episodes since the one in January. We pray that our little woman with the issue of blood can just touch the hem of his garment so we don't have to go back to the hospital for this.
Well, we never quite connected with Rick Santorum at the political event as I was late to it and Jesi wasn't really sure where to go, but they did get to see Rick speak. We will just have to catch him the next time he is in the area which may be soon, but if not soon, maybe the general election...we will see. Tuesday is our big day for the Michigan primary which should prove quite pivotal. Currently it's a dead heat.
Wednesday, February 15, 2012
Faith is doing pretty well today. She is laying beside me right now happily jabbering. You can see from the picture above how happy she is. Jesi is getting beaten up by Faith as she is kicking her feet, and Jesi wisely sat at the end of the kicks. We have been slowly ramping up her feed rate. We had tried moving it up a little to quickly and she didn't handle it well, but she is much better since we backed off some. It is so much fun to watch her when she's not crying...well usually. She did wake us up at 4am this morning, but she wasn't crying or in pain. No, she was playing. She was talking and moving around...in fact at one point, I wondered what was going on over there. It sounded like she made the crib jump off of the ground. At least she wasn't crying, but I kept asking her to go back to sleep. We could have just gotten up though because we never really got back to sleep. Oh wait, Jesi did, but then she is up all the time with Faith.
Monday, February 13, 2012
Later in the day I received a call from a producer at WDIV TV Channel 4 Detroit. They would like to feature our story in the news so they are scheduled for a visit with us tomorrow night. Of course that hinges on the news of the day, so we will pray for a slow news day. :)
Next, Jesi called me to tell me that a reporter from Mail Online (Daily Mail) wanted to cover the story also. Grace put some pictures together for her, and she quickly wrote a story. I have provided the link to this story.
When I arrived home, I learned from Grace that Rick Santorum posted the link on his presidential campaign facebook page. There are some interesting comments on the thread, and some very nice comments. It is amazing how fast a story can spread...although we are trying to spread it. I have been in email contact with Senator Santorum, and the more I communicate with him, the more I respect him.
We want to thank Kathy Gray and Eric Seals from the Detroit Free Press for their great work on this story. We appreciate their ability to tell a story and stay true to it. I also appreciate the editors who helped make this story happen as well.
Saturday, February 11, 2012
Today we had Miss Kathleen Gray, a news reporter, and Mr. Eric Seals, a photographer, come over. It was an interview for the Detroit Free Press. They heard about our Rick Santorum story, below, and wanted to do an article about it. Mom and Dad sat on the couch with Faith and told our story. The rest of us sat around for about 45 minutes. Then the others got bored and went upstairs while I stayed down to take video and pictures. After they finished we had a family photo shoot and then Mom, Dad, and Faith did one by themselves. The article will be in the Detroit Free Press on February 13th, 2012. You can also see it online on the 13th. Click for the Detroit Free Press website: RIGHT HERE!!!.
|Make your own free photo slideshow|
February 3rds Posting: CLICK HERE!!!
Thursday, February 9, 2012
Wednesday, February 8, 2012
The doctors decided along with us that the best course of action would be to wait until Faith has another bleeding episode to try to find the source. We went to the hospital as soon as her bleeding began, but you know how they want to do tests until they have more information. Well, some of the tests were simply too late because the bleeding had stopped. Now we will immediately take her in if this happens again, and they will test her without waiting on her CBC. This is what we wanted to happen this time, but it's just how they roll and sometimes you have to roll with them. The more they see how well that we know our daughter - the more they listen to us. So the trip wasn't a total waste. Anyone who has dealt with anything like this knows that we as parents have to grow to trust our doctors, but the opposite is quite true as well because doctors grow to trust us as parents. The more they are around us; the more they listen to us and will act upon our observations.
The timing of Faith's dismissal from the hospital was convenient because Jesi was able to take Faith to her therapy appointment today which is also in Ann Arbor. This is a long drive, but Jesi said this therapist had more success with Faith than any of the other's who have worked with her swallowing so the continued trips will be worth it at least.
Tuesday, February 7, 2012
Tonight they did a red blood cell tag test. They take blood out of her and tag the cells nuclear material then put the blood back in so they can watch the blood. This test is supposed to find active bleed, but of course, Faith doesn't make this easy since her bleeding is intermittent. That test just came back negative so no current bleeding which is good and bad.
All in all it was a long day of testing. We will have to ask some good questions because the next likely step is exploratory surgery which we would rather not do again. This whole thing is troubling simply because it has been so difficult to figure out. It is a good thing that we have a God who is able to do exceeding, abundantly, above all we can ask or even think.
Monday, February 6, 2012
|Faith is a bit pale as you can see, but she is doing well.|
|My beautiful wife gets lonely without us there (especially me). Of course I miss her tremendously and she wants you to know that I sob uncontrollably when she is gone.|
Faith's blood loss seems to have stopped for now and begun to build back up. Her hemoglobin was down to about 8.3, but was back up to over 9. When it drops below 8, they will give her a transfusion. We would like them to give her a bit of blood anyway. She is much more susceptible to things when her blood level drops, but a transfusion is like putting adrenalin into her. Her energy level rises very quickly. It is quite funny to watch her get blood, and of course, it is nice to see color reappear as well.
Sunday, February 5, 2012
Faith is still bleeding, but I hate to say this...not at a fast enough rate. Her bleed rate is too slow for the test to work. I love the staff here though. We were talking to a doctor who was brainstorming other ways to check her, but he isn't sure if they will want to do his idea. Basically, he wants to give her meds to help her bleed more while in the PICU where they can control the bleeding, but you can imagine that may not fly. We appreciate his thinking and will see where this goes.
Jesi and the kids just got back from the family play area and football experience. They loved it except it was all Michigan themed which made them a bit sick to their stomachs. :) I have raised them well.
We are going to watch the Super Bowl here. It made me begin to think how many events that we have spent in the hospital with Faith. We have been here for Thanksgiving, Christmas, my birthday, our anniversary, and now the Super Bowl. We also were in the hospital for the Ohio State - Michigan game for Gideon's birth. I had to get that one because Gideon wanted to be mentioned in the blog.
Saturday, February 4, 2012
Faith is doing pretty well, but they haven't done too much yet. Our U of M GI doctor visited Faith today. We had a March appointment with him which we tried to move up...not the best plan for moving the appointment up, but it is effective. The plan is to keep tabs on her hemoglobin level. If it continues to drop and at a fast enough rate, they will do a procedure where they look for the bleeding sight by going through her veins. I am not sure how they do this, but she has to be actively bleeding and at a fast enough pace so the test can determine where the bleeding is.
The next option is to put a pill in her to see how the pill goes through. If the pill cannot make it all the way through, it will dissolve, but if the pill can make it through then we might be able to give her the little camera pill. The first one is simply to determine if she can get the camera pill through her intestines. If she can, the camera would take lots of picture as it goes through so they can see the inside of her small intestines to determine where the bleeding could be originating. This would be fabulous if it is possible, but they just don't have many good options for little ones. There are lots of options for adults so I ask myself with all the crazy technology we have...why not make the camera even smaller?
Friday, February 3, 2012
When I arrived home, Faith was having a good time. In fact when they were hit by the car, she started laughing...she loves loud sounds. All of a sudden she started crying in pain so I began venting her, but it just continued until we began to smell, well, you know. The odor was strong and not really something we wanted to smell. When we checked her diaper which had overflowed, it had blood in it. Jesi has a bag packed so she grabbed all of Faith's stuff while I cleaned her up. Then we loaded them up in the smashed van and sent them to U of M Mott Children hospital which is about an hour away. Jesi is currently on the road driving to U of M. We need to get her checked quickly to see if they can find the source of the bleeding while it is active.
We will update as we learn more...
Well today at 5:15pm, I was sitting in my office working and listening to the Michael Medved show when Michael began to tell the story. He did a pretty good job especially considering he was doing it from memory. I had sent him the 2 pictures above and wrote the story in the email so he could have it for reference, but my contact is his producer, the pride of Hillsdale, Jeremy. It just so happens that Jeremy was off today so Michael didn't get my nice little written recap. It was quite fun to listen to though and be reminded that we live in the greatest nation on God's green earth. :)
Monday, January 23, 2012
|Here is Faith intubated with RSV and the H Flu.|
|Here is Faith today...ah, that's what we like to see.|
|Nice to see her sitting up instead of laying in bed...of course she no longer has on these cute little pajamas as she just threw up on them.|
It was nice to come home to see Faith smiling, dancing, and enjoying herself.
Sunday, January 22, 2012
|BEFORE...Faith before March 7, 2011|
|AFTER...Faith on December 2, 2011|
|AFTER...Faith on December 23, 2011...3rd birthday|
I happened upon some photos from earlier in the year when I took some pictures of Faith before her jaw distraction. My after shots are not directly from the side, but these 2 photos months after give you a great view of the impact the jaw distraction surgery has had on Faith. I made them larger so you can more easily see the difference. For those of you with T-18 babies, look at the jaw of your children. If they appear anything like Faith's short jaw, please get to a good ENT and get it checked. If you are anywhere near Michigan and U of M, Doctor Green was our ENT. Faith has been so much better off since we did this. It is amazing how she went from looking like a baby to a little girl. We are happy to discuss this with anyone interested...we will tell you the good and bad, but know that we would do this all over again. We can also help you know some things to watch during your procedure to avoid some of our struggles. This procedure can totally change how your child can breathe and end or drastically reduce apnea.
Saturday, January 21, 2012
|You can see how happy she is with Minnie...it was so much fun to watch her reaction.|
|We think she is doing an impersonation of Goofy...love those faces.|
|Ahh...gotta get a photo with Mickey Mouse.|
|Faith, you're not suppose to lick Donald Duck's bill.|
|Oh those stars are so pretty...look at the camera.|
|As long as she had her sunglasses, the warm sun was great.|
|Sporting a cool look in Florida.|
|Woody and Buzz...boy are they big...look at the size of that hat.|
|Chilling with Hope's Minnie.|
|Ok, the guy who took this picture was way too nice. He took a family photo then had our other children move out of the frame so he could take pictures of Faith with just Mom and Dad. It made Jesi cry and she hugged him because it was so thoughtful.|
|Faith really enjoyed all the lights in the Christmas display...she is in awe.|
|She is happy to spend time with the princesses dressed in her own princess dress.|
|She enjoyed meeting Belle, but this was really Hope's wish come true.|