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.