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)