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 :)