December

It has been way too long since I've write a blog.  But everything has really been going great. Tripp had an appointment with his opthamologist and he said that everything was still looking great with his eyes. He finally started walking everywhere about a month ago! Hardly ever crawling anymore, and is doing great! Even though he has been walking more and more and developing the arches in his foot, his ankles still roll inward alot. We are going to be taking him soon to an orthodic specialist to be fitted for some type of device to hopefully start to correct this before it gets any worse.  We have to go for a check up with his ENT next week in North Carolina, his doctor recently moved offices from Wake Forest to an office in Clemons, so it will be a new trip for us. He is also talking up a storm! So far he can say, mama, dada, hi, bye, night night, eat, more, milk, Bella, all done, yea, and maybe a few others that have slipped my mind right now. Something we have to start thinking about is if we want Tripp to start preschool in the hearing impaired preschool next fall, as you only have to be 2 to start this program. It would be 5 days a week for 3 hours a day. Something big for us to think about since we want him to all caught up and not have problems learning and understanding once he gets to kindergarten BUT he also has some major stranger anxiety. So we will see.

As always God is good all the time :)

Graz Feeding Clinic

Recently there was an article about a feeding clinic in Austria. I read alot about this clinic and how they did things when I really decided I was going to get Tripp off of his gtube.  I am thankful I did because if I had not weaned him the way I did he would most likely still be using his gtube.  However, in the United States it is often seen as gruel to not feed a child. But when a child has a feeding tube they have no idea what the feeling of hungry is, and they do not get that feeling without skipping the tube feeds for a while.  This was the same reason that Tripp would still be my happy baby when he hadnt had a feeding since the night before when he had surgery the next day. In that sense it was a good thing for us, and it was what he needed in the beginning of his life when he was aspirating liquid into his lungs. But, their are many children in this country still using a feeding tube who do not need it other than they do not get hungry to eat. I wish there were more clinics in the United States to help parents get their children off of their feeding tubes like the one in Graz.

http://www.huffingtonpost.com/2012/09/06/daniel-harrison-fear-of-eating-food-drink_n_1861694.html

August

We've had another not so busy month which has been nice! Tripp went in for a regular 15 month check up on Monday the 20th. He was 27lbs and 10oz and 33in long! That puts him at the 82nd and 92nd percentiles, if he keeps growing like he is he should be 6ft 2in, taller than both of us :) He also now has 6 teeth and 2 molars just barely poking through! All but 1 lonely tooth are on the top.

Then Thurs the 23rd he had physical therapy, we both worked with him and he was still sitting down as soon as we tried to even get him to stand/walk with us.  This was for about 30 minutes, then we were letting him play for a few minutes while we talked about getting Tripp fitted for some type of braces to help him get up and get walking.  This is all he apparently needed because after we talked about this for a few minutes he stood up by the loveseat and took 4 steps! Needless to say bracing is now put on hold. She comes back in October again, if he is walking well and his ankles are still turned inward then we will be looking at some type of bracing at that point. But if his ankles get stronger and correct themselves it will be the end of physical therapy for Tripp, at least for now!

He is still getting speech therapy 2x a month, he is doing well and saying and signing a few words consistently. This time next year he will be able to start at a preschool in our school system that is only for hearing impaired children.  While I hope the next year doesn't fly by, I think that this will be a great experience for him and really benefit him in getting ready for school!

Hope everyone else has enjoyed August as much as we have :)

July

I will have to say, this has been the best month for our family.  We have had hardly any doctor appointments besides therapy so it has been nice to slow down and have a life outside of the doctors office.  Tripp did have a check up with his plastic surgeon earlier this month, he went to check him out and he was really confused. He asked me I did do his cleft repair right? He said it was the best repair he has ever done because he can't even tell that it has been repaired. Since we got such a great report we don't have to go back to see him for another year! At that time he will also meet with the speech therapist there to be evaluated and of course continue our therapy at home.  At this point we only have to go back to Wake Forest once in December, once in January, and then once next June and July! This is amazing for us as we are usually making that trip 3-4 times a month.

Since everything has settled down so much, we have been thinking more and more about cryotherapy.  This is a preventative procedure that would prevent Tripp's retinas from detaching.  He is a good candidate because the Stickler Syndrome gives him a high chance of retina detachment (which can ultimately cause blindness if it is not caught soon enough).  So, we have lots to think about before he goes back to his Opthamologist in October.

Good non medical news, Tripp has 4 teeth!! 3 on top and 1 on the bottom! His drooling is also full force working on more. He is also looking more and more like a little boy instead of my little baby every day. Now I'm just waiting for him to start harassing his big sister like she does him  :)

June :)

June has been a great month for Tripp! After having his gtube in for 1 year and 1 day, he was able to get it taken out and he has not looked back at all. To celebrate, we went and bought him a few tshirt outfits (he needed a onesie before so he was not able to get to the tube to play with) and had cupcakes after dinner to celebrate.  Here is a picture of him eating his celebration cupcake!

It is just so wonderful to have been celebrating this day so soon.  Especially since at our last GI visit the doctor mentioned he was anticipating taking it out at around 2 years old.  I guess this was all Tripp needed to hear to motivate him!

Tripp has just been having fun being a normal baby so far.  He is talking more and more, adding dada and uh oh to his vocabulary.  Now he is saying these along with mama, hi, and bye.  He is also very close to saying more and milk.

We just cut down our speech therapy to 2x a month and pt to 1x every 2 months.  He also has less doctor appointments now, which is also really nice.  We have been enjoying our new time by spending more time playing outside, and at the pool.  He loves to play, unless he is touching the grass which he hates.  And he loves the pool.

At a year old, I know most parents have thought back and think of how fast the year has went by.  But, for us it has been one long and hard year.  We are all very thankful that it is over and our little boy is continue to thrive in every way.

1 year old :)

In the past month Tripp has had a lot going on.  He had his first birthday get together, which was great.  We got to spend some time with family members all together which he loved.  He also had his first bite of cake, which he couldn't get enough of.

He then had his palate repair, which is awesome.  Tripp is such a trooper and never even needed a gtube feeding throughout it all! He also had tubes placed in the surgery and had an abr done.  The abr did show that the fluid wasn't affecting his hearing like we thought it may had been.

Today, Tripp had both physical and speech therapy.  His pt said that she is going to stay with him until he is walking, but really he is ready to not see her and all caught up and where he is supposed to be! Our speech therapist is also really happy about where he is, that he is eating so well, and really starting to make more noises and at different pitches. He is doing awesome, but still needs to see her every week for now.

He also had his 1 year appt, he weighed 23 lbs 9oz and 30 3/4 in long, which are the 50th and 90th percentiles.

Hopefully we will be enjoying a fun summer that will include having his gtube taken out!

Its amazing to think about where we were this time last year and how far Tripp has come.  He is really one special little boy, who has a big purpose in this world! God is so good :)

Tripp having a cupcake :) 

Bucket List

I know we all have a "Bucket List" for ourselves and maybe even for our children.  But what would you want to do if you were suddenly told that you only had another year or so to live. What would you do if you were told this news about your precious new baby.  This is exactly what has happened to a precious little girl Avery. I hope that everyone helps to fulfill the number one thing on her bucket list, to share her story and tell others about the genetic syndrome, SMA, that she has.  I hope that everyone who reads this will visit her blog http://averycan.blogspot.com/ and help her to spread the word because this could happen to anyone.

One of Tripps biggest accomplishments :)

Even though it has only been 8 days since I have posted last alot has happened in those 8 days.

Monday, we went for Tripps preop visit for his cleft palate surgery.  They are also going to be putting ear tubes in and then doing an abr while he is under.  We did get some great news (great to me) at the appointment.  Since Tripp's cleft is so far back he is not going to make him wear no nos! He had to wear them for a short time after his 2nd jaw distraction and they were horrible, he hated them and just cried the whole time. Since it is so far back there is no way he will get his finger back there, he just is not allowed to have a straw, a paci, or anything long that could get back there to hurt the palate repair.

The next thing is what I consider to be Tripp's biggest accomplishment yet, today is the 2nd day is a row that he has not had any tube feedings!! For us this is awesome news and just shows me that whenever I am ready to give up on it he can show me who is boss.  I say this because he had improved but was still not drinking what he should be.  So, I did a ton of research and found a more aggressive weaning plan that both Ricky and I were comfortable with.  I emailed Tripp's GI doctor about what was going on and the plan Wed. morning, well I guess it doesn't really matter what he thinks about that plan now! God is good :)

11 months old

Today Tripp is 11 months old! He has had a rough month of battling the ear infection that was found last month.  He took 3 different antibiotics and the doctor finally gave him an antibiotic in a shot and this has seemed to clear it up.  He hasn't gained much weight because he hasn't been eating as much as usual where he wasn't feeling well, but he hasn't lost weight either so that was really good. 

He is continuing to learn new things despite not feeling well.  He is pulling himself up to standing, and starting to cruise around the furniture.  He is also eating lots of different kinds of foods. 

His next surgery is scheduled for May 1st. During this surgery the plastic surgeon will be repairing his cleft palate, the ENT will be putting tubes in, and then an audiologist will be doing an abr.  Hopefully the tubes will have a positive effect on the abr results when compared to the last one. 

Lastly Tripp now has a favorite tv show, yo gabba gabba, he does not pay attention to the tv at all unless this cartoon is on.  He loves the bright colors in the show and all of the singing :)

March

Tripp is absolutely doing wonderfully after his surgery.  He is back to eating the same amount of food he has been eating, still saying mama, and drinking some out of his sippy cup.  He just had his 9mo check up and most of all is well.  He is 22lbs 11oz (75th percentile) and 30 inches long (90th percentile).  And is okay developmentally.  He is still seeing speech therapy every week and physical therapy 2x a month so that he doesnt fall behind on anything.

Our speech therapist is going to be presenting information about Tripp and jaw distraction soon, and she wants us to think of something to say about it all.  There are so many things that I can say, I dont know how I will pick just one.

When Tripp was in the nicu in Roanoke, doctors told us we would not take him home with us until he had a trach.  I am thankful that we would not take that as an answer, and I am thankful for the one doctor who helped us find Wake Forest once we voiced to him that we wanted to look into the other procedures.  I am thankful for the jaw distraction because I never have to have a nurse in my home most of the day.  I am thankful that Tripp can get a cold and not have a 50% chance of dying because of a simple cold.  Im thankful that I know he is breathing at night, and he will continue to breathe all night without any obstructions.  Im thankful that when I lose track of time and its 5 minutes until 1, that I dont have to pack up a ton of stuff just to go pick up Bella from preschool, instead Tripp and I can run to the car and go.  Im thankful that our life is relatively normal compared to what it would be if Tripp had a trach.

I could go on and on about these things, how do you pick just one? When you look at all of the cons with a trach, how can anyone chose trach over jaw distraction? Unfortunately in this area it is being done, but I hope that once the doctors see how awesome Tripp is doing that he can change it.

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.  

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 :) 

  

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 :)

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*

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!