Tomorrow, he is having surgery #5 to have his distractors taken out at 6am. One thing is for sure, we are definitely on the down slope of all of this :)
Monday, February 27, 2012
End of February
It surprisingly hasnt been a too busy month. Tripp is getting mostly good news at each appointment that he has. He is continually working on his eating, but really gaining weight. Today we went to see his GI doctor, and he actually told us we could start mixing his formula regularly now! He weighed 22lbs 6 oz and 29in long. Which is around the 75th and 50th percentiles.
Sunday, January 22, 2012
Pictures
I was looking at before and after pictures that I am giving to our speech therapist tomorrow and want to share them with everyone else. The difference in Tripps jaw is so amazing!
Before
After
They are both while he still has distractors in at home after each surgery :)
Before
They are both while he still has distractors in at home after each surgery :)
Wednesday, January 18, 2012
Geneticist
We went to visit Tripps geneticist this week and overall it went really well. He thinks that Tripp is doing really well especially because of all of the time that he has spent in the hospital. He basically told us alot of things that we had talked on the phone before when his test results came back positive for sticklers syndrome. Just he needs to be monitored by an eye doctor for retinal detachment, that he could get arthritis early in life, hearing issues, and needs to be monitored for a heart valve problem. And of course this is where the pierre robin came from.
There are 5 different types of sticklers syndrome, each effects a different collagen gene (a protein which is one of our "building blocks"). The type that he has is a dominant form it may have been caused by a mutation which would mean that this is a new thing for him, or either Ricky or I may have a mild form of sticklers syndrome and not know it. And actually it is thought that sticklers syndrome is usually not diagnosed in most people who are affected by the disease. This would be important to know in case we would also decide to test Bella, or for our siblings to get tested when they think about having children as well. Because of this, we finally decided that we would get tested for it as well. I went ahead and got my blood drawn for the test, and we will wait to see what the results are before we test Ricky (because if I do come back positive then we probably dont need to test him as well).
Overall it was a really good visit, the doctor really took a lot of time with us to make sure that we understood things which also gave us time to think of other questions that we may of had. And he did a great physical assessment, and finally a doctor gave me a reason to why Tripp holds his ankles a different way (he said they show some pronation-where the ankle turns in making the foot turn out- but it is normal in babies and we should just keep an eye on it). This makes me wish I had asked him while we were in the nicu. But it was definitely refreshing to see a doctor give so much time to his patients, I would refer him to anyone just because of that alone. Other than that everything was good, and we are already having Tripp followed by the doctors that he needs to be seeing and other than the genetic testing for us he just wants to see Tripp back in a year :)
And some really good things Tripp has accomplished this week:
We finally found some baby food that he loves! Baby yogurt! We are so excited for him just to be eating something through his mouth!
And when we were up feeding him at 1am Saturday night, he said mama! Totally not expected as I was trying to get him to go back to sleep, he said it several times then and some more on Sunday but hasnt said it since. But its a huge step for him because he wasnt even wearing his hearing aids!
*Anyone can give up, its the easiest thing in the world to do. But, to hold it together when everyone else would understand if you fell apart, that is true strength*
There are 5 different types of sticklers syndrome, each effects a different collagen gene (a protein which is one of our "building blocks"). The type that he has is a dominant form it may have been caused by a mutation which would mean that this is a new thing for him, or either Ricky or I may have a mild form of sticklers syndrome and not know it. And actually it is thought that sticklers syndrome is usually not diagnosed in most people who are affected by the disease. This would be important to know in case we would also decide to test Bella, or for our siblings to get tested when they think about having children as well. Because of this, we finally decided that we would get tested for it as well. I went ahead and got my blood drawn for the test, and we will wait to see what the results are before we test Ricky (because if I do come back positive then we probably dont need to test him as well).
Overall it was a really good visit, the doctor really took a lot of time with us to make sure that we understood things which also gave us time to think of other questions that we may of had. And he did a great physical assessment, and finally a doctor gave me a reason to why Tripp holds his ankles a different way (he said they show some pronation-where the ankle turns in making the foot turn out- but it is normal in babies and we should just keep an eye on it). This makes me wish I had asked him while we were in the nicu. But it was definitely refreshing to see a doctor give so much time to his patients, I would refer him to anyone just because of that alone. Other than that everything was good, and we are already having Tripp followed by the doctors that he needs to be seeing and other than the genetic testing for us he just wants to see Tripp back in a year :)
And some really good things Tripp has accomplished this week:
We finally found some baby food that he loves! Baby yogurt! We are so excited for him just to be eating something through his mouth!
And when we were up feeding him at 1am Saturday night, he said mama! Totally not expected as I was trying to get him to go back to sleep, he said it several times then and some more on Sunday but hasnt said it since. But its a huge step for him because he wasnt even wearing his hearing aids!
*Anyone can give up, its the easiest thing in the world to do. But, to hold it together when everyone else would understand if you fell apart, that is true strength*
Friday, January 13, 2012
January
I won't know what it is like when I don't have to see a healthcare worker everyday. This week we went to see Tripp's plastic surgeon. He said that he is looking really good, and actually contemplated fixing his cleft at the time he takes his distractors out, but then I was telling him what the ENT wanted to do at the same time and he changed his mind. He is going to be talking to the ENT to decide for sure what he will do then but so far in about a month he will be taking out his distractors and undoing his tongue. We will just have to stay overnight for this surgery- it is usually out patient but he wants to monitor us over night since we live so far away.
We saw both his physical therapist and speech therapist this week, and that went good. They are both really happy with Tripp's efforts even though we still have some work to do with both. Also our speech therapist asked if her supervisor could talk about Tripp's case in an upcoming class she is going to have. I'm excited about this just because the more health care workers in Roanoke that know about the procedures Tripp has had means maybe saving another baby in this area from a trach!
Tripp's hearing aids have been coming out of his ears really easily, so we went yesterday to have new ear pieces fit. Even though he kept pointing to the pink sparkly one I chose orange and blue for him :)
Lastly today we went to pick up his thumb splints and his shoe inserts. The thumb splints are to help hold his thumb out because he usually keeps it across his palm all of the time. Then the shoe inserts are because he likes to constantly keep his toes clenched pretty tight, these should help him keep his toes flat.
Next week we have a follow up appointment with the geneticist and speech therapy--hopefully it stays this way with only 2 appointments! Overall though Tripp is doing pretty awesome!
We saw both his physical therapist and speech therapist this week, and that went good. They are both really happy with Tripp's efforts even though we still have some work to do with both. Also our speech therapist asked if her supervisor could talk about Tripp's case in an upcoming class she is going to have. I'm excited about this just because the more health care workers in Roanoke that know about the procedures Tripp has had means maybe saving another baby in this area from a trach!
Tripp's hearing aids have been coming out of his ears really easily, so we went yesterday to have new ear pieces fit. Even though he kept pointing to the pink sparkly one I chose orange and blue for him :)
Lastly today we went to pick up his thumb splints and his shoe inserts. The thumb splints are to help hold his thumb out because he usually keeps it across his palm all of the time. Then the shoe inserts are because he likes to constantly keep his toes clenched pretty tight, these should help him keep his toes flat.
Next week we have a follow up appointment with the geneticist and speech therapy--hopefully it stays this way with only 2 appointments! Overall though Tripp is doing pretty awesome!
Saturday, December 31, 2011
Christmas
We were able to finish Tripps distraction on Christmas Eve, and we all had a wonderful Christmas. Rickys family came on Christmas Eve, my mom and Willie came Christmas day, and then we visited my dad and Pam Monday. My kids are beyond loved and spoiled, and they both got enough toys to keep them busy for the next year or longer. We were all just happy to be together.
We have also enjoyed a whole week at home without any doctor appointments! That has been an awesome present for us! And this week we only have to go get the synagis vaccine, and a speech appointment which is an another pretty easy week as well!
All week Tripp has been trying his hardest to get into a sitting position from lying down all by himself, maybe that wont be too far off :)
We have also enjoyed a whole week at home without any doctor appointments! That has been an awesome present for us! And this week we only have to go get the synagis vaccine, and a speech appointment which is an another pretty easy week as well!
All week Tripp has been trying his hardest to get into a sitting position from lying down all by himself, maybe that wont be too far off :)
Wednesday, December 21, 2011
Home for Christmas
We are so excited! Tripp isn't quite done with his distraction, but tomorrow night after they distract him for the second time we get to go home! We will be doing the rest of the distraction at home by ourselves. Then we will come in for a check up. Then in around a month he will have to come back in to have a surgery to remove the device from his jaw. This is usually outpatient surgery but we will probably stay one night just because we live so far away.
That will be the last surgery he has to have until around a year old when he will have his palate repaired; they will also put tubes in, undo his tongue, and do an abr while he is under anesthesia that time. And then they very last surgery will be his gtube reversal and this will be just whenever he can eat everything he needs to by mouth. Hopefully everything will go perfectly from here on out and we will be able to stick to this plan :)
That will be the last surgery he has to have until around a year old when he will have his palate repaired; they will also put tubes in, undo his tongue, and do an abr while he is under anesthesia that time. And then they very last surgery will be his gtube reversal and this will be just whenever he can eat everything he needs to by mouth. Hopefully everything will go perfectly from here on out and we will be able to stick to this plan :)
Saturday, December 17, 2011
Dec. 17th
This is the 3rd full day of distraction for Tripp. So far he has done really well. He is tolerating his whole feeding through his gtube, he isnt interested in his bottle but we are assuming its just because his mouth is still very sore. He is now only getting some pain medicine 2x a day, this is when they come to actually turn his pins to distract his jaw. Last night was the first night that he also slept all night long too.
We are just excited that he is doing so well, and for the most part back to his normal self. Hopefully everything will go as planned and we will be home for Christmas :)
We are just excited that he is doing so well, and for the most part back to his normal self. Hopefully everything will go as planned and we will be home for Christmas :)
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