The Sweet Sound of Laughs and Cries

About 10 days ago Milo went to the hospital for some planned procedures under anesthisia. His ENT doctor took a look down his airway to see how things are progressing. The procedure is called a rigid bronchoscopy, he has had it done many times before but this time we got the most wonderful news. His trachea looks the best it ever has, now that's still a long way from 'normal' but it's a huge step in the right direction. There was no swelling, his malacia (floppiness) is better but not gone and the scar tissue from his big surgery is stable and looks like it will not hinder growth of the trachea. In fact his airway looked so good that they decided to downsize his trach, that's the next step toward getting the thing out for good. He is now in the smallest size available for a kiddo his size, amazing progress!! For those keeping trach he was downsized from a 3.5 Peds Bivona to a 3.0 Peds Bivona. Having a smaller trach tube means that more air goes around it rather than through it. Right away I hear a difference in his breathing, you can hear him breathe through is mouth and nose now :0) More air around the trach means more air available for making noise and boy is he getting used to it. For the first time since March 2007 I have heard my baby laugh, it is such a sweet sound and I never get tired of hearing it. Mostly he just giggles and shrieks, belly laughs are still mostly silent but I'll take those giggles any day. Along with the ability to laugh comes the ability to cry and again for the first time in 18 months I can hear him cry and to be honest it's just as sweet of a sound as a laugh. What I hear is usually whimpers and small cries when he is upset or a little frustrated, the big "I'm hurt" or "I'm really mad" cry is still silent but I'm sure one day those will come through loud and clear too. He also has a new accessory for his trach that will allow him to make more vocalizations. It is called a Passy-Muir Valve, it allows him to breath in through his trach but forces him to breathe out though his mouth and nose. He still isn't fond of the valve but he did wear it for 15 minutes in Speech Therapy last week. It takes some getting used to because it alters the way he breathes, some kids panic at first and I can't say I blame them, but Milo took it in stride. He didn't like it but didn't completely loose it either.

The other procedure he had done while under anesthesia was an upper GI or EGD to look inside his stomach to see if they could identify anything that would make him wretch so bad after getting fed though his G-tube. Again, good news here, everything looked essentially normal. The doctor felt there was a spot near his g-tube that looked different but not anything of concern. So my no-so-expert opinion is that his old g-tube (Bard Button) had rubbed a spot in his stomach raw causing pain every time he ate which led to the retching. The bard button had a harder plastic mushroom looking part that went inside his stomach and ever since the day it was changed last May he has been miserable, maybe something strange happened when it was inserted, who knows, but it's water under the bridge now. About 4 weeks ago his bard button was removed and a new mini button was put in. This one has a small balloon that gets filled with water inside his stomach so I can image it might be more gentle on the inside of his tummy. It took a couple weeks after the change but now Milo can eat larger quantities of food much faster and has NO retching at all, that has been a huge relief for all of us.

I'll sign off with a list of Milo's new accomplishments:

• is getting good at problem solving, will move a chair or stool to get what he wants
• has learned more sign language, Monkey and Hat are his favorites right now
• babbles like a 6 month old :0)
• can jump in the air and occasionally catches some air
• climbs even higher, found him on the table on top of the computer keyboard the other day
• blows kisses
• can walk down steps holding on to something
• shrieks with delight in a store when he sees something he wants
• pulls things off the shelves in the stores
• shared his toys with his cousins

Milo Found His Voice

Milo discovered his voice this past week! He learned that if he puts his finger in his trach it is easier for him to make noise. It really is cute :0) We went to the zoo on Saturday and while we were walking out he decided to give his new skill a try. I made it to the car and had to stop to take a video. The zoo was crazy busy (it was a free admission day) and people were waiting for our parking spot but I could have cared less. This is a big Milostone! Once in the car and on our way home his finger found it's way into his trach. I think that at least half of the ride home he was jabbering away, at one point he started to cough with his finger stuck in his trach. At first I was proud of him for being able to cough so well but eventually I had to reach back and pull his finger out so he wouldn't choke. Silly kiddo... Turn up the volume on your computer and enjoy Milo's voice!!!

Milo's communication has progressed so well this week. Not only is he making more noises (and louder noise) he is showing off a few new signs. We have been trying for a long time to get him to use sign language to communicate and he has been, well to be honest, stubborn. I know not a shocker to anyone who knows Milo. He has been signing "all done" for a while now but this week he repeatedly used 3 new signs, "bubbles", "monkey", and "book". We have a bottle of bubbles sitting on the counter and he has to request them by sign to be able to play with them. I'm stubborn on that one :0) he gets to chase the bubbles when he does the sign. He signed monkey while we were at the zoo watching some little monkeys climbing the trees, chasing birds and investigating the water. I was so proud of him and he has consistantly used it ever since. This morning he signed "book" for me. I knew he could do it, he just had to do on his own terms, go figure that :0) I found a great series of sign language videos called Signing Time that Milo loves, we check them out from the library so gets new ones every so often. There are a couple of them that I would buy because he loves them, he is captivated by all the kids and the songs and he is obviously learning from them too. Maybe we will put those on his Santa list.

Out with the Old, In with the NEW...

This is what Milo's room looked like Wednesday morning, ventilator next to his crib...

And this is what looked like Wednesday night...

Now the ventilator lives in the next room with all the other medical supplies

If you haven't guessed by now, Milo is officially OFF THE VENTILATOR ALL THE TIME!!!

Last weekend Milo didn't sleep much at all, he just kept disconnecting himself from the ventilator or would wake up when you hooked him up. There were a few long nights of no sleep and no naps for 3 days, he was a tired grumpy little guy. He had his pulmonology appointment on Tuesday so I mentioned his newest trick figuring they would laugh and say sorry but I did not expect them to say that he could be off the vent at night. What a nice suprise. Instead of the vent at night he now has a trach collar with humidification to keep his lungs from drying out. It is so much smaller but a bit noiser than the vent. It has taken a few nights to adjust it properly and to get Milo used to wearing it. Last night Milo slept soundly for 10 hours and woke up a pretty happy little guy. At first it's a little scary not having the vent at night because I knew it would alarm if anything strange happened and the new contraption doesn't. He still wears his oxygen monitor at night so that is reassuring ;0)

Here's a new list of Milo's recent accomplishments:

• runs, runs, runs
• turns in circles when he is happy
• CLIMBS on everything
• is trying hard to jump
• had his g-tube changed from a Bard Button to a new mini button
• gained weight -- about 2 pounds in 4 weeks!!
• grew about half an inch too
• now gets real food blended up through his g-tube
• makes lots of noise but no words yet
• has mastered two words in sign language--all done & go
• put a 9 piece puzzle together with minimal assistance
• follows simple directions (when he feels like it)
• went to the zoo for the first time, Grandma & Dylan came with us
• went to the Children's Museum with Dylan & trach friends
• learned that hammers are heavy when lifted above the head & air compressors make scary loud noises when you push the wrong button

Welcome To Holland

While sitting in the pediatrician's office for what seemed like an eternity the other day I saw this story on the wall and thought it explained the experience of having a child with special needs better than anything I have ever seen or heard. Check out my previous post to find out why we were stuck in that room for so long.



WELCOME TO HOLLAND
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



A note about the author:

Emily Kingsley has been a writer on Sesame Street for 28 years. She has a son who, in 1974, was born with Down Syndrome. Her work as an activist and writer has helped to change the perception of children with special needs. Emily was instrumental in including children of all abilities on Sesame Street including the little girl, Tarah, who was in a wheelchair and her son, Jason.

DEJA VU

Well, here we are sitting in room 847 of The Children's Hospital, AGAIN. It is kind strange yet almost "normal" feeling being here again. The room is essentially unchanged, but I can't help but look around and notice that the walls have some dents and the floor is a bit more used than when we left. We were the only people who used this room for the first 6 months this hospital was open and for the last 5 months many patients have come and gone.

So "why are you there" I'm sure you are asking. Milo has been having some problems with his g-tube feeds. He gags and forces himself to belch (not an easy thing for a kid with a Nissen) and is just miserable no matter what we try. It started out happening for a few minutes after each feed and on Thursday he was uncomfortable all day and that night he was completely miserable. We had a night nurse Thursday so it was nice to have the help. He was so uncomfortable his breathing started to be affected. He needed more oxygen than normal and was working harder to breathe. I took him to the pediatrician on Friday, of course our normal person was not in so we saw another doctor who decided that he needed to be admitted to the hospital since his breathing was being affected. He was so miserable at the doctor's office that he laid in my lap and cried. I had never seen Milo cry because he felt bad or was in pain. He even cried out loud. The 8th floor didn't have any beds so they checked the 6th floor but they didn't have any either. The doctor called around and eventually we ended up back in our old room. The 8th floor is equipped to take care of 4 trach/vent kids at a time & Milo has made the 5th one right now but as soon as they figured out it was Milo that needed to come up they figured out how to get us up. It took a while before they would be ready for us though so we spent hours in a small exam room. Milo didn't really care, he slept most of the time. He is feeling better now but has had very little to eat since Thursday night. His breathing is back to normal. When we got to the floor they increased the support he was getting on the vent and increased his oxygen. He was off the vent for most of today and did just fine. I thought they were going to put his vent settings back to his normal but that didn't seem to happen today, guess I'll check into that in the morning. He is on IV fluids to keep him hydrated and this evening we started giving him some Pedialite which seemed to work out alright. The doctors aren't sure what is going on. He has had lots of blood work which looks alright and a chest x-ray that looked good. A GI doctor came today to look at him and get some history but I haven't heard back from them yet. Hopefully tomorrow we will try a little bit of formula and see what happens.

Well guess I should go now. Milo is awake in his crib and sticking his finger in his trach for attention. He slept from 8-10:30 and is wide awake now...

WOOO HOOO!!!

Milo had an appointment with his pulmonologist today. We almost didn't make it though, I lost the car key and tore the house apart looking for them. I finally found it and out the door we went, I think it's the fastest we've loaded the car yet. We got there right at his appointment time but still had to wait for a long time to see the doctor. She came in and was amazed with Milo who was not on his vent and doing great. She asked what our routine was for being on the vent. I paused not sure how to answer her question and then asked her if she wanted to know what she told us we could do or what we were really doing. She smiled and said she wanted to know what he was really doing, she knew we weren't following the "rules" to the letter. I told her that he really was off the vent most of the time he was awake. We (loose translation meaning his nurses) try to keep him on the vent in the morning but by afternoon everyone is tired of chasing him down because now he runs away when you come at him with the vent. The doctor said she is fine with that schedule because he was obviously doing well. She asked we try to keep him on the vent in the morning but knows he won't put up with that for long so we now have official permission for MILO TO BE OFF OF THE VENTILATOR WHILE HE IS AWAKE!! I think his nurse was more relieved than me :0) He still needs to be on the vent while asleep to help with his growth. He still works harder to breathe than the average person so he uses more calories, if he gets a little help while sleeping it should continue to help with weight gain.

Before I go here's a video of the little guy in action. He can now climb the ladder to the slide. This time he was successful, the next time he fell off. Only a few little scrapes and hurt feelings other wise no harm done.

He's A CLIMBER!!!!

Look at the new trick Milo learned today...




He is such an ornery kid! Not sure if he thought he was going to take a bath in the sink or what but being the good mom I am I took a picture before repeatedly removing him from the sink in his kitchen. Obviously physical therapy is working for him :0) Most important is that he is getting stronger. Now he can put all those skills and scheming into action, I think I'm in serious trouble! And if toilet basketball were an Olympic sport Milo would have won the Gold Medal. Today's score is Milo 5 (rubber duck, tadoodles crayon, small stuffed hippo, 2 Croc shoes) to Mom 0.

I'm so sorry for the long delay in updating. Internet issues, then computer issues, then nurses on vacation, then 4 doctor appointments in one week keeps a person busy :0) This update is pretty long, hang in there with me, here we go...

New Skills

• Walk with better balance
• Walk backward
• RUN
• Climb on everything
• Get down off the couch/chair/bed
• Turn in circles
• Crawl though tunnels
• Attempt sign language--work in progress
• Vocalize much louder--aaahhh & eehhh are his favorites
• Imitate other people, a very important milestone

Breathing

Milo is pretty sure he doesn't need the ventilator anymore, now he just has to convince the doctors. It is almost impossible to keep him connected while he is awake, we do our best but since he doesn't seem to have any trouble breathing while off the vent it's hard to keep him connected. He has a pulmonology appointment next Monday so we will see what the doctor says. The biggest challenge is keeping his airway humidified while he is running around. He isn't very good about keeping his HME or artificial nose on either. We just need to suction him more often but I'd rather do that than chase him with the ventilator.

Challenges

During the last 6 weeks we have had 2 major challenges, his skin and his tummy. His eczema wasn't getting any worse but it wasn't getting any better either. His cheeks still had some red patches and his scalp was horribly flaky as well as patches of red on his trunk. He went to see a dermatologist and within one week he was SO much better. The doctor put him on Zyrtec during the day and another antihistamine at night to stop the itch and gave him some liquid steroids to put on his scalp. He is no longer itchy or flaky, his body is no longer red and itchy and the spots on his cheeks are very faint. YEA!!

His other challenge is his tummy, every time he got food though his g-tube he was miserable and he hadn't gained weight in a while. It was so bad that he would lay on the floor retching and eventually fall asleep. His g-tube wouldn't stay shut and food and stomach acid would pour out several times a day. I now put a rubber band around the g-tube to hold it shut but that doesn't always work. Yesterday was a good example of that, I think half of what went in came back out. The retching is the part that is most frustrating and his pediatrician can't figure it out. We tried changing him from his specialty formula to a homemade formula that I concoct every morning out of milk, meat puree, veggie puree, juice, rice cereal, honey & olive oil. For a lot of kids this switch will fix their issues but not for Milo. The volume required was just more than he could handle. He was put on a medication to help empty his stomach faster but that didn't seem to help either so I asked to go back to feeding him at night with a pump. This way his day time volume would be less hoping that it would make him feel better but it didn't seem to help much either. Night feeds are hard because the feeding tube can easily pop out of his button and we feed the bed. I figured out a way to lessen the chance of that happening but then the homemade formula didn't go though the tubing at night correctly. All the meat and other solids stayed in the bag and created a sludge at the end that wouldn't flow. I tried his old formula but it was too thick for the pump to handle. Eventually I figured out to make his a "night formula" that contained most of the milk & juice and a "day formula" that has the rest of the milk & juice mixed with everything else. So now I can get it all into him and most day keep it in but the retching continued and was accompanied by huge amounts of gas, remember he can't burp very well. I figured out the retching was because he needed to burp so I would hook up his "burp" tube and get some out but it was hard to get it all and it took quite a while. Eventually I think we found the magic bullet, but really it is just a side effect of another treatment. Milo has a yeast infection around his trach stoma, we have known it was there and were tyring to treat it with topical meds but it just wasn't working so his ENT put him on an anti-fungal medication (Diflucan) and with the very first dose Milo's retching almost disappeared. Today he had none at all!! Sounds to me like he also had yeast growing in his stomach. Since he is on a daily antibiotic and steroids every other day it makes a yeast infection much more likely, we were trying to avoid it with "good bacteria" like the ones in yogurt but I'm guessing it didn't work.

The Fun Stuff

As you can see from the slide show at the top of the page, we have been having a fun summer. In mid July we had a little pool party, that was lots of fun. Faith, one of Milo's hospital trach buddies, and Penny & Malia came to play. It was crazy hot that day but the kids had a great time and the big people did too.

Milo's second cousin Alisha came to stay for a week so we took her out to play too. We went to a water park, the Cherry Creek Mall & The Butterfly Pavilion. The water park was interesting, we did pretty good keeping water out of Milo's trach but I'm sure some got in there, he is pretty good at coughing stuff out now so that helped. It was so hot that day, part of our record breaking above 90 degree streak. Our next outing was to the Cherry Creek Mall and Build-A-Bear. This time Milo didn't freak out with the stuffing machine :0) We also played at the soft sculpture play area. Our week ended with a trip to the Butterfly Pavilion. It was still crazy hot but it was worth it. Milo had fun chasing the butterflies, checking out the plants and playing in the play area.

Milo's cousin Brett was here in Aurora for his 7th Birthday! We went to Chuck E Cheese for dinner and played and played and played. Milo had a great time on the kiddie rides with his cousins Owen & Dylan. I wasn't sure how he would handle all the noise and commotion but he took it in stride.

About 10 days ago we had a great get-together with other trach kids. We connected with old friends, Faith & Noel, and met a new one too, Marissa. Marissa and her parents came all the way from Colorado Springs! The parents of a little girl still in Children's came too. It was such a good time to not have to explain what all his hardware and accessories were, everyone just new. The girls were pretty content to stay on a blanket and play but not Milo, he wanted to explore! We tried to get a picture of just the kids but it was just too much to ask so the mommies got involved too. All four kids are close to the same age, only 4 months separate the oldest and youngest.

Left to right: Marissa and Alicia, Faith and Jen, Milo and Me, Noel and Tina

After our record breaking high temperatures it finally cooled off and rained. I decided it was time to let Milo dance in the rain. He has never been in the rain before but in typical Milo fashion he loved it and you'd never know it was a new experience.

I think that should about do it, you should be caught up to date now. Phew, I'm really going to try to do this more often. I know I've said it before so don't hold your breath :0)