Truett sat up!

Truett sat up today on his own. I was upstairs and he was in the basement with the nurse when she called me to look quickly. There was Truett sitting up! Congrats baby Truett you are growing up! ok now you can stop! :o)

I didn't get the picture from the first time, but then later in the evening he did it again! Here are the pictures from the second time he sat by himself...

Pictures!

Daddy and his boys after church
Mommy and her boys (no comments about how my hair is the same color as the tree....!!!)

Truett -ba-guett

Jay and his baby brother

Daddy reading to his boys, I am so happy Dillon was lifting his head and looking at his book!

Jay helping Daddy rake the leaves, I love how the rake is bigger than him!

After raking we had some fun!

Truett in the leaves

My three little men!

Ok so Jay loves to pick on his brothers.... at least it is done in brotherly love!

Praise the Lord! Dillon has been doing so good he was able to go out without pulse ox or oxygen or suction and I was confident he was ok. I love being able to take him without all those tubes and wires we can do so much more with him! I love you Dillon!

Mommy and her sweet Dillon boy

Thanksgiving Day with my grandparents, uncles, aunts, cousins and aunt's parents in VA. We had a great time seeing everyone! I am so thankful I have a wonderful husband that said we were still going even once our nurse canceled out. He stayed up 2 of the nights with Dillon and I was with him the last night.

Sitting around talking, having fun together!

Great Grandpa and JayDonn. We love you Great Grandpa!

Making Apple pancakes. It is a tradition in our family, Grandpa makes them for special occassions. Last time we went to VA Grandpa thought it would be the last time we got them, and he said that again this time - but I told him I don't believe that since he was wrong last time. Praying for you Grandpa. (My Grandpa has stage 4 cancer, but God is good and he is doing well and is mostly pain free right now!) This time I got to help with the pancakes and put my sweat and blood into them - literally... i shredded my finger and was bleeding! hahaha It wasn't bad just enough to get a bandaide for!

Truett kept crawling under Grandpa's chair and laughing about it.
Daddy and two of his boys

Grandma and I working hard in the kitchen....

....while Grandpa and the boys are napping in the living room.

Aunt Sherry holding Truett

Aunt Sherry Uncle Donn and two of thier children with Truett

Daddy was so tired from taking care of Dillon two night in a row and the day before that we got up at 4am to drive to VA.

Mommy and Dillon - Jay took this picture all by himself

Jay took this picture of Grandpa and Gramma all by himself too!

Josiah put lights on the holly berry tree outside Grandpa and Gramma's house. It looked so good!

Truett looks like he is trying to stand ;o)

Sitting up like a big boy!

Look at my little man go! 6.5 months old, crawling, sitting and grwoing up WAY too fast!

Mommy and Truett

Hope you enjoy these pictures of what we have been up to recently! I need to post some videos here soon but at least these are finally on!

Hope you all had a wonderful Thanksgiving and looking forward to the season of celebrating our wonderful Savior's birth!

Updates

Let's see, what's been going on?

Josiah: Working, helping with the kids, singing for church, men's book study with men from church, video crew at church, etc.

Tiffany: House cleaning, laundry, caring for the kids, video crew at church, home school with Jay, etc

Aren't we exciting?

Now for the fun ones in the family...

Dillon: The brace was allowed to come off on Oct 27. He had been doing great with it off. Dillon has been going to church with us again. Yesterday he went to a vision class at the YMCA that his vision teacher heads up. He loves it! He was cooing during the circle time and did a craft. I even helped him finger paint the icing on his cookie and smell and taste the icing. He had a great time.

For almost 3 weeks he has been off ALL oxygen all day long!!!! Praise the Lord! I can't remember a time when this has happened. I think the robinul he is on to dry up his secretions are helping him to breathe better (since he isn't drowning). I am thrilled! Do you know how nice it is to just carry Dillon outside one some sunny days we had without having to take the pulse ox, suction and run oxygen tubing all the way out? I don't think I could describe how nice it has been to go out and just have oxygen in case we need it, but we haven't needed it! Instead of going through a huge oxygen tank every week we have been going 2 weeks and still only half empty! Thank you Lord! I can't thank you enough for the blessing it has been these last few weeks!

Nursing situations continue to test me. In every way, patience, being positive, trusting God, not hurting anyone, etc. We have had a lot of on going issues that I am trying to figure out how to handle them so they won't continue to happen and all the while trying to make sure Dillon's care is being done and without making everyone hate me. If I am too nice things don't get done, if I am too business I get people upset with me. I would rather have people upset with me, but even that is hard when I have to have a business relationship with people on a daily basis for the rest of my life! Please continue to pray for me. I don't think I will ever have this "figured out" as I am dealing with so many other people and I can't control how they act/talk/work/etc let alone how I act/talk/ etc.

Nov 18 we have an appointment for aquatic therapy at CHOP. It is the evaluation then we will schedule the actual appointments. I can't wait! I think Dillon will do great in the water!

Dillon did GREAT for the vision teacher today. I hung a black sheet in his therapy room that is the background for him to look at objects. We used it for the first time today and Dillon did so good. He kept opening his eyes to find a pink ball she had as she brought it into his view. I am so happy! He was actually opening his eyes, locating it and locking his eyes on to it.

Later today I picked Dillon up and heard a loud POP in his left leg. I didn't have a nurse here with me so I called my mother in law (who works on rehab floor in a hospital) and I called Josiah. Josiah came home from work when he heard me in tears. I thought for sure I dislocated his hip again. Right after it happened his eyes became huge and his heart rate went up and his whole body was tight. I called the ortho doctor and his nurse said to wait a couple of days. A couple of days? I think I dislocated his leg that he just had MAJOR surgery on and we have to wait a couple of days? I was a mess thinking I did something because every time we touched him his heart rate would go up. We decided to take him to a local ER and have them X-ray to see if any damage was done. It turns out it was just a ligament or something because the X-ray looks good. So I could have waited - but them I would have been torturing myself wondering if he dislocated it again and if he was hurting and if he would need surgery again etc. It feels much better to know the X-ray showed it is ok. They said the ligament could hurt for about week. :o(

JayDonn: Jay has been doing great with school. He can write almost every capital letter now. He loves doing school work. The only time we seem to have trouble is when the work is too easy for him. I was working with him on piano too and he couldn't do a simple 1-2-3 and I couldn't figure pit why. Then I remembered! Just because the book says to do right hand right doesn't mean I have to. I started with his left and PRESTO he got it! I have to remember he is a lefty! I can't remember any of the funny things he has been saying recently. I will have to start writing them down to put them on here. For a long time after Dillon's surgery Jay was in "melt down" mode. Since Dillon is coming out of it and able to go places with us again Jay is doing much better. His world is returning to normal. He is too smart for his own good! :o)

Truett: Truett - my baby - is growing up so fast! He is trying so hard to crawl. He gets his legs up under him then kicks out but usually doesn't go too far. If we put him on the inclined floor he can crawl the length of it (8 feet) in no time at all. He doesn't sit yet, but he doesn't stop moving long enough to sit. I think he will crawl before he sits. He still projectile vomits all over the place. Last night I held him above my face and he puked into my eye, in my nose, in my mouth, and covered my shirt. It was nasty! He sleeps in his crib in Jay's room now so we only have to heat one room. He usually goes down about 11pm and sleeps until 7am.

I think that is about all for now. I have to remember to update more often and to get pictures/videos on. Maybe one of these days - when I have nothing to do - I will sit down and catch up one them.... hahaha.... maybe. Thank you to everyone who reads this blog and everyone who prays for us. You don't know how much it means to me to know that when I feel like quitting, when I feel so down and discouraged there are people out there who are praying for us. No one told me the hardest part to being a Mom is having a special needs child, and the hardest part to having a special needs child is all the other people I have to work with on a regular basis.

ER and Family Fun

Josiah's brother and sister in law came in this weekend for a wedding. When they arrived, however, we were at CHOP's ER. :o(

Let me catch you up...

Wed morning when the nurse got here she took Dillon's temp and it was 102. Yikes! But we thought maybe he was just warm and we had to get out the door to get to CHOP for his post op appointment for urology and ortho. One the way to CHOP Dillon vomited so many times, he was fighting his brace, he was going crazy! It was non stop the whole way to CHOP. When we got him to the first appointment we saw his stomach was puffed out (and since he was having such a hard time, he didn't get food.) We vented his belly and got a lot of air out of his stomach and he still had a fever. We went to the next appointment and put him on the bench to rest while we waited. I carried him back to the X-ray room, then into the appointment room (let me remind you, Dillon is NOT light!)

While we were waiting I heard the doctor in another room telling a little baby (maybe 9 months old) "It isn't THAT bad!" as he/she was crying while having his/her brace adjusted. Then Dr. Sankar came in and said the brace has to stay on for two more weeks! My heart hit the floor and my blood pressure hit the ceiling. I specifically asked at the last appointment what the chances were that the brace would need to stay on longer. He told me "Almost never. I always take it off after 6 weeks." Well this time he told me, "I always take the cast off after 6 weeks, then put a brace on but since he already has the brace we will just leave it for 2 more weeks." What? Why wasn't that explained to me when I specifically asked? Because he isn't listening to me, he is always in such a rush to get out of the room. I was so excited to let life get back to normal for Dillon, Jay, me, everybody! Jay has been having a hard time the last 6 weeks and I was so excited that everything would start to go back to normal. Well it won't. Anyways, then Dr. Sankar started ripping, and yes I mean ripping, the tegaderm off of Dillon's incisions. I told him to stop and that I would do it at home. He wanted to see them, however. Then I asked him to get adhesive remover and he said "No, tegadrm comes off easily" Well Dillon's heart rate jumped up, he got all tight and mad. Remember now, he is horribly sick and doing bad as it is. Then when he was done ripping it off he started to pull off the steri strips that are on top of the stitches. The nurse suggested he stop and just cut the loose part off so he did that. Then he started to rip the sock off of Dillon's leg that was stuck to him. Again I told him to stop and the nurse told him to let us soak it at home so it won't rip Dillon's skin. After he was done, I looked at Dillon's legs and saw tons of red cuts in it where the tegaderm cut him. The nurses answer "Oh he must have very sensitive skin." I know this! This is why I asked him to use adhesive remover, this is why it is written in his chart to be very careful with adhesives.

I do NOT recommend anyone going to Dr. Sankar. He may be a great surgeon, but he has no bed side manner to be dealing with children. He is in such a rush he doesn't listen to questions and give you honest answers. After my 6 week check up I will start going to another hospital for Ortho.

Dillon has 2 more weeks in the brace - he can come out for a bath but that is it. Then he is allowed to come out of it without even having another X-ray. The biggest fear is if the leg crosses mid line it could dislocate the hips again.

As we left CHOP Dillon was doing as bad as ever. He was horribly sick so we rushed him home and put him on CPAP. He did calm down a bit, but still had his heart rate 140-180 (better than up to 230 like it had been at the hospital). I had given probably 80 drops of oreganol through the day. That evening his fever went to 103. That night we were trying to figure out what was going on with him, we thought he didn't have a bowel movement since Sunday evening since it wasn't recorded anywhere in the nurses' notes. That night, our nurse called off and they couldn't find a replacement. Which I am not sure why because the two nurses I have had since both said they could have done it if they would have been told when I was told (5pm) instead of 9pm or not being told at all. Thursday morning I called the doctor and told him everything that had been going on... you guessed it... he sent us to CHOP's ER. They did an X-ray which showed some back up, but not a blockage of the bowels. The blood work came back clear, and they did a strep test. By this time, Dillon was doing great. Other than the 4 sticks it took to get his blood/IV. They ran some fluid and said it is probably a virus that has to run its course. Josiah came to the hospital with his brother and sister in law and we were all there for several hours.

Since then Dillon has been doing much better. I think it was a virus and the oreganol knocked it out of him much faster. He still isn't handling his food as well as normal, but it is much better than it was. Friday we went to Valley Forge park with everyone except Dillon who stayed home with his nurse. Yesterday Grandpa, Grandma, Daddy, jay, Truett, and I went to Lancaster to see animals, eat ice cream, and buy pumpkins. Since we had a call out we had extra hours to use so again Dillon had to stay with a nurse. I can't wait for this brace to come off so he can do things with us again!

Tomorrow! Tomorrow!

Tomorrow! Tomorrow! You're only a day a away! After 6 LONG weeks - Dillon will be getting his brace off tomorrow Oct 13 at 1pm (ish) He has been stuck in this bed for the last 5 weeks, moving only to his right side. Just yesterday we finally put him on his belly for the first time since the surgery... You can see how hard that was!
He was so happy! His heart rate came down, his oxygen levels were great, he slept so comfortably. He has been on medicine to help with the secretions, but he still loves his belly! Tomorrow, Baby tomorrow! He can have baths again, go on his belly, be HELD, go out with us, start therapy, be moved around. I don't know who is more excited him or me!!!

Truett liked to eat his toe, the one with the red light. He would make a funny face at the taste, but then look at the glowing red light and have to go back for another taste! Truett now rolls all over the floor. You leave him on one side of the room and find him someplace else a few minutes later. He is trying to crawl but can't quite move yet.

Postural drainage. You have to get creative! Actually he would slip down in the brace so his G-Tube was be pushed by the stomach strap, so we would do this to "pull" him back out of the brace a little so the tube was in a better place.

I am so bored with my hair. It is so thin after having babies so I was trying to decide what to do with it. I wanted to dye it to a dark brown with hints of red. Well this is what I got....

It was CHERRY RED. OOPS. Well a friend on facebook explained to me that you can't go from light brown to dark brown without going to red first, so actually I did need to do this. So then I added brown on top of it and then got it cut. So this is what I am now....

Still much more red than I had wanted, but at least I don't look like a cherry anymore...well now I just look like a cherry with chocolate syrup on it! hahaha Oh well at least it is hair and hair grows back and dye will eventually wash out! :o)

Not again!

Dillon's patch to dry up his secretions was done and I couldn't find a doctor to write for more. All the doctors kept saying have the first doctor who wrote for it write again - well that was the PICU doctor and they don't write for anything once you leave the PICU. I don't know why messages weren't being given right but they weren't. We got an appointment scheduled with a Pulm doctor... but for some reason my doctor didn't call my normal pulm doc he called a different one. This new one WANTED Dillon to be full of secretions so he could see how bad he really is. huh? That means we are risking an aspiration so he can see for himself it is bad? Why aren't we seeing his doctor who already knows his baseline?

So our appointment was yesterday, we left 1 hour 15 minutes before the appointment. But due to the flooding and sink holes and accidents on the road it took us 2 hours to get there. We called 2 or 3 times to tell them how late we were and they said to keep coming. Once we finally got there the nurse told me we had to go home and reschedule. I argued with them that we were told to keep coming. She made a phone call and said I don't know who told you that but you have to go home. I kept arguing with them and told them if they didn't see him I would have to take him to the ER (he was coughing SO bad by this time for hours!) The nurse practitioner finally came out and said she was the one we talked to on the phone. I explained Dillon's health issues to her and she went to talk to the doctor. They finally said they would see him, but they didn't know how long we would have to wait. It didn't matter - he needed to be seen.

It wasn't too long of a wait and the doctor was in. He was talking to me about options to dry up his secretions and asked if we are sure we want him "dry and sticky" I said yes I have to for the next two weeks. He said Oh you only want it for 2 weeks, oh then that is no problem I can write for it, that wasn't what I was told. AHHHHHH Why wasn't the message given properly that I am looking for help with his secretions for the 2 weeks we have left in the brace then after that we can position him like we normally do?????

Anyways, the doctor and I decided to put him on the medicine he is allergic to. We are doing a low dose and have upped our limits for oxygen to 4LMP if needed. This medicine we can adjust the dose up or down based on what he needs, the patch he was on is an all or nothing and tends to dry him up too much. The doctor also wrote me a script for this in case we need it.

On the way home and to the pharmacy to get the medicine guess what Dillon did. Aspirated! After coughing the ENTIRE 1.5 hours home he aspirated. He projectile vomited brown stuff from the back seat to the dashboard. He has been sick ever since. He started with a fever, high heart rate, non stop coughing, tight muscles, etc.

The new nurse last night didn't understand when to give more of the medicine so he was coughing all night and so he is having a bad day. His oxygen levels are ok so far on the new medicine so we shall see.

I appreciate all your prayers. I am sorry I have to ask people to pray all the time for us, but it makes a difference and it helps me to hear from people that you are praying. There is such a comfort in knowing that people are lifting our son up to the Lord! Thank you!!

Hot Air Balloon

Remember how Josiah bought us a Hot Air Balloon ride for my 25th birthday, but it was canceled due to weather? Well we got to finally go on the ride last night! It was awesome! I started getting nervous as we were driving there, then I was fine, then I got nervous as it lifted off... but it was totally awesome!!!

Here we are meeting up with the group...
They said they used to do all the work, but people always wanted to help so now they let people help set everything up and take it down.

It was HUGE but this is not a "big" balloon they said! We almost didn't get to do it since it was still pretty windy but at the last moment they decided to go for it! He said the balloon is 50K but since the owner wanted pictures of flowers and her dog on it it was 65K. Wow!

The fire was so hot right above our heads. It was cool jumping into the basket then lifting so gracefully off the land.

Look at the view! Awesome!!

Thank you Josiah - this was a wonderful birthday present and I will never forget it!

The sun setting in the distance.

We actually hit trees with the bottom of the basket to slow down then only had 2 bounces as the basket landed. It wasn't bad at all. Then the men jumped out and moved the basket into the field a little more. We happened to land in a field that wasn't privately owned. Some men saw us hitting the trees and thought there was trouble so they ran over, but it was just how you slow down a giant balloon filled with air and a basket full of people I guess!

All I can say is totally awesome and I would love to do it again sometime! Thank you Husby!!