Tuesday, December 23, 2008

Making Christmas Cookies

Milo helped make Christmas cookies for Santa today.

He wasn't too sure about the feel of the cookie cutter on his hand at first. He kept pulling his hand back but finally got the hang of it...


Sprinkles are lots of fun!!



Waiting is so hard to do...


Finally the finished product!

He didn't try to eat the cookie, probably a good thing because he's allergic to wheat and eggs. If I thought he'd really try to eat it I would have made him some that are allergy free :0) Did you see the pink thing on his trach? That's a cap that totally closes off his trach and makes him breathe the traditional way (though his mouth & nose). We had an incident earlier this week where I gave him a glass of milk (sippy cups are no good anymore) with just a very tiny bit of milk in it, he tried to drink it and the milk poured off his chin straight into his unprotected trach. Needless to say much suctioning occured and I learned to cover the thing with something so I tried the cap and he didn't mind one bit. YEAH that mean we're getting closer....
We're leaving Tuesday morning to go to Grandma & Grandpa's house for Christmas. Yesterday Milo started rolling his suitcase up and down the hall. I think he is ready to go, what do you think?




Hope everyone has a Terrific Christmas!!!

Friday, December 19, 2008

Two Years Ago Today

Here is a video I recently came across on my computer of Milo when he was only a few weeks old. He was finally awake some during the day after his big surgery but he was still getting sedation medication, the weaning process is very slow after being on them for so long.

video

Watching this video now I realize just how small and frail he was. At the time I thought he looked good and really he did for what he went through. I never could have imagined how the next 2 years would play out or that he would be playing in the snow just like any typical 2 year old. Enjoy this video of him in the snow last week.

video

I know it's been way too long since I posted last, so much has happened. It's hard to keep up with Milo these days, he's a typical toddler with the terrible 2's who just happens to have an alternate method of breathing :0) I promise that I will get pictures of his birthday parties up soon!

Friday, October 31, 2008

HAPPY HALLOWEEN!!!

Ok, I want to know who leaked to Milo that today was a holiday? Every holiday Milo gets sick and up until today has been in the hospital. Today did not involve the hospital but the little guy was MISERABLE all day long. My appologies to everyone at Children's Hospital, we planned on coming to visit and show off one cute duckie but it just didn't work out. His stomach was bothering him, probably because I just posted that he was all better. He did perk up long enough to put his costume on and take a few pictures but then we fed him and he didn't feel too hot again. More about the belly stuff later, for now here are our Halloween pictures from carving our Jack-O-Lantern yesterday to costume pictures tonight!


Pumpkin "before" picture


You want me to put my hand where?


Finished Jack-O-Lantern


Our friend brought Milo a Halloween Mr. Potato head because he loves his Mr. Potato Head so much!


What a Cute Duckie...


Indulging Mom for just one more picture

Wednesday, October 29, 2008

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

Monday, October 20, 2008

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!!!

video

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.

Friday, October 10, 2008

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

Sunday, August 31, 2008

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.

Saturday, August 30, 2008

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...

Monday, August 25, 2008

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.

video

Tuesday, August 19, 2008

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)




Tuesday, July 15, 2008

SIMPLE PLEASURES

Yesterday evening Milo and I went into the backyard to water the grass. It was probably around 8:30, still light but finally cooling off a bit. Milo had a great time running though the grass, it was so nice to see him enjoy a "typical" kid activity. I decided to join him, we sat in the grass and rolled around. I lifted him the air and pretended he was a airplane, he had the biggest grin on his face. I was so nice to just enjoy the evening and watching him play without having to worry about oxygen tubes, ventilator circuits disconnecting and whether or not he was breathing well enough. Care free is the way to be and I see more and more of it in our future!

Along with the fun stuff comes the more typical toddler behavior too. My phone ended up in the toilet yesterday. When he is free to roam he must be watched closely around the potties. He was in my bedroom playing and wandered into the bathroom, he doesn't get in there very often so he was exploring, I caught him in the shower investigating the drain at one point. Shortly after that I saw him head toward the potty with an item that was beside the bathtub so I rushed in to intervene. I discovered that he had already dumped an empty shampoo bottle into the water, "Oh well," I thought "no big deal" and I fished it out only to uncover the telephone had sunk to the bottom. I pulled it out shaking my head thinking "I guess this really is my fault," and set it in the sink. This morning I went to assess the damage and it seems to be in working order. It was asking to be charged. I haven't used it yet but it looks promising! At least it wasn't my cell phone, I have 2 other extensions on the house phone I can use :0)

Tuesday, July 8, 2008

IT TRULY WAS AN INDEPENDENCE DAY


It may have been Milo’s second 4th of July but it was his first Independence Day. Milo had so many Milostones over the holiday weekend I’m not sure I can remember them all. We went on our first vacation, to Alamosa to visit friends and family. Milo did incredibly well considering it was his first long car trip, the first time he was in another house, his first large family gathering, the first time he played with a baby younger than himself, the first time he met his great-grandpa, the first time he sat on great-grandpa’s tractor, he got his first scraped knee and elbow while playing outside, his first parade, his first fireworks, his first time being outside after dark, his first car ride in the dark, his first church service and I’m sure there were so many more firsts that I just can’t remember right now.

I wasn’t sure we would be able to make the trip even though we had been planning it for a while now. The weekend before Milo had a nasty stomach virus that landed us in the Emergency Room and finally admitted to the hospital for some IV fluids to rehydrate him. It was a short stay, only 2 nights, but we got to see many of our friends, nurses, and doctors. Milo came home on Monday but he still wasn’t feeling quite like himself, his stomach still bothered him but he is a trooper and made it though the worst of it. Aunt Peggy was our chauffer and we decided that we would try to make the trip and if we had to turn around we would. On Thursday we left Aurora at 1:45 and arrived in Alamosa at 6:00 with only one stop in Walsenburg to stretch our legs. Milo did very well, I wasn’t sure how he would react, if his stomach would bother him and how he would tolerate being strapped down for that long. We got to my parent’s house and Milo was very confused about where we where and why Grandma was there but he took it all in stride and in no time was exploring the house. On the 4th of July we went to the parade in downtown Alamosa, Milo seemed to like it except for all the fire trucks at the end who set off the sirens at the same time! After the parade we wend back to Grandma & Grandpa’s house for lunch where Milo had a great time playing with all his cousins. That night we went to the fireworks, I wasn’t sure how Milo would react to the loud noises but he didn’t seem to care and got board in the middle of the display. Saturday we had a little get-together for people to come meet the little miracle they had prayed so much about. Again he took it all in stride. Sunday we went to church where he fell asleep half way though the service. After lunch and a flury of packing we left Alamosa at 4:00 and arrived in Aurora at 9:30. Milo was less patient with the trip this time. He was way to tired and just didn’t want to be held down so we ended up stopping several times to avoid complete meltdowns because those are not pretty in Milo, they involve blue lips and strange breathing. Yesterday and today Milo has been more tired, trying to recover from the big weekend I imagine, I know I am still trying to! Our nurses are also on vacation this week so we only have 2 day shifts covered but we also have 2 night shifts covered because a couple of Milo’s night nurses from Children’s are helping out when they can. I think I might be exhausted by the beginning of next week!

One of the best things about our vacation is that Milo was able to be off the ventilator for several periods of time during the day. The week before we left Milo had a pulmonology appointment where they decided to let him try periods of time away from the ventilator and the carden valve. He just has a little “artificial nose” covering his trach to filter the air and trap some humidity so his airway doesn’t dry out. His oxygen has been decreased to ¼ liter while on the ventilator and in Aurora he generally doesn’t need oxygen while using his “nose” but in Alamosa he certainly did. 2000 feet higher in elevation does make a difference. All the kids were so good about untangling his oxygen tubing and making sure we knew when Milo pulled it off.

Milo finally has a physical therapist; in fact it’s a husband wife team who came today to meet him. They are excited about working with him and were impressed that he can do all that he does. They are primarily going to work on balance with him because he still doesn’t walk in a very straight line. Next week we have an occupational therapist coming to start working with him. He has had a speech therapist for a few weeks now so I think now we finally have all his therapies going again, it only took 3 months.

Well better go for now the little guy has just awoke from his nap and the thunder has him a little bit concerned. He doesn’t seem scared just a bit concerned about where that noise is coming from. I’ll try to get more pictures posted soon!

Thursday, June 19, 2008

MILO HAD BLUE LIPS TODAY

Yup, Milo had blue lips but they were an alright kind of blue lips. He had a blast playing in the water outside today. This spring I found the best water toy for toddlers and bought it, Milo has been studying the box just waiting for the chance to play with it. The weather was warm (ok, it was down right hot) so out of the box the pool came. He wasn't too sure at first but quickly warmed up to it and dove right in. He has no fear of getting wet, not sure that's a good thing for a trach kid though. The pool isn't deep, only a couple of inches and the rim sprays water. He liked the slide and didn't even seem to mind the sprinklers at the bottom that almost got his face. Despite the heat cold water chills a boy and the lips showed it. By the time his chin was shivering he was done playing and walked himself back into the house and looked at us like "aren't you coming"? I think I found his favorite summer activity, sounds like this little pool will get a ton of good use.

Monday, June 16, 2008

THE PITTER PATTER OF LITTLE FEET

The pitter patter of little feet accompanied by the beep of the ventilator followed by a large sigh from every adult in the house. This is the scenario that plays out countless times each day in our house. Milo is officially a walker; he has been for several weeks now. In fact he is getting quite good at it. His favorite activity is to pull off his circuit and RUN down the hallway. He is quick and if you don’t chase him he will get into his bedroom then peeks out to see where you are. Usually we are fumbling with his ventilator trying to untangle cords and oxygen tubing to get the vent down the hall. If he is feeling especially ornery he will run to the bathroom and put his bath toys in the potty. This past weekend we got sod installed in the backyard and Milo was so cute running across it. He wasn’t too sure he liked the feel of the grass on his feet and between his toes at first but he got over it! Outside is the same, he pulls himself off the ventilator but he has so much more room to run in every direction. I will say we are not always as quick as we could be to hook him back up, he seems to do fine off the vent for a few minutes but we are not pushing the limits to find out how long :0)

Going back a little bit—Milo had surgery to remove some scar tissue from around the hole in his neck and they replaced his g-tube at the same time. He did pretty good with surgery but his lungs were kind of yucky for a little over a week so we ended up at the ER for a quick visit. He had a chest x-ray to make sure he didn’t have pneumonia and they took a quick look down his trachea to make sure that was alright. After 4 hours and no real answers we went home with some extra steroids, an inhaled antibiotic and an appointment to see the pulmonologist. Basically I learned to call the doctor in the morning if I have concerns because if you call too late to be seen in the clinic they make you go to the ER. After 5 days of increased steroids and 2 weeks of the antibiotic he seems to be doing much better and he is as ornery as every! After the g-tube change it took his tummy some time to adjust to the new g-tube because it functioned properly. The old one had a malfunctioning valve inside that is supposed to keep the stomach contents inside him. It leaked all the time but it also allowed extra air out of his belly. The new one doesn’t leak but we learned that we have to “vent” him now to let the air out, we hadn’t had to do that for at least 8 months so that took some getting used to for all of us.

Milo finally has a speech therapist; she started working with him last week. I could tell that he is interested in making noises and words so I insisted that we get speech therapy set up. We are still waiting on physical and occupational therapy, the organization we are working with for his therapy has been very slow so we just might find another organization for his physical and occupational therapy. I am so excited about his speech therapist, she is wonderful. Milo was very glad to play with her and excited about the toys she brought with her. She is also going to work on eating with him. I keep telling everyone that he would panic if a chunk of food got in his mouth, either chunky baby food or a rice puff. Of course the end of last week he started eating a few rice puffs, he picked them up and put it in his mouth. He still makes a funny face but he swallows it and he’s totally fine with the Stage 3 baby food we had for him. Go figure, he made a liar of me once again but I’m alright with that! He is drinking a little bit from his sippy cup again so progress is being made.


I can see the new things that Milo is learning all the time. He is starting some pretend play by sharing his pacifier with his stuffed Mickey Mouse and giving hugs and kisses to all his stuffed animals. His hugs are really just laying his head on the animal and kisses are putting his mouth to the animals face. TOO CUTE!! He is still obsessed with toes and feet, his and everyone else’s. He actually bit my toe the other day; I couldn’t get mad at him because we are so excited when he puts anything in his mouth. Luckily he doesn’t do that very often and only to me (so far). He learning to roll a ball back and forth with someone and rolling his cars on the floor or table rather than just spinning the tires. He is into climbing now. He climbs on the edge of his toy basket to empy the shelf on the entertainment center and climbs on his suction machine to get onto the couch. Luckily he has learned how to safely get off the couch but I don't trust his too far yet.

Well I’d better go for now. Milo’s vent has been almost constantly beeping while I escaped to write this so his nurse is probably very tired of chasing him around :0)

Friday, May 16, 2008

A Little Bit Of Freedom


Did you notice what is missing in the photo above? That's right, he isn't attached to a ventilator. Unfortunately this is only a little break but it gives us a taste of what is to come. Milo has been given a preview of the freedom that awaits him when he able to rid of the ventilator. Yesterday we went to the hospital and met with Cloy (respiratory therapist) who gave Milo a new piece of equipment, a very small one that replaces the ventilator for a couple of hours each day, right now he get's to use it for 2 hours each day. It is called a carden vavle and it provides Milo with the constant pressure he needs to keep his airway open. His PEEP study from Monday shows that he has improved enough to be able to use this little valve. It has oxygen attached to it and it attaches right to the elbow adaptor on his trach so the only thing Milo has to drag around is an oxygen tube. It is so much lighter and we can make it as long as we want. Milo can now get anywhere in the house he wants to without having a big person hoovering over him pushing the ventilator. I think it's about as nice for me as it is for him. It took him awhile today to figure out that his range is much larger but before long I found him in the bathroom, at least he wasn't playing in the potty (yet).
Milo has huge ugly, nasty smelling granulomas (a type of scar tissue) surrounding his trach stoma that will be surgically removed next Wednesday. He will also have a bronchoscopy done since no one has looked down his trachea since the end of November. Hopefully he will have his g-tube changed at the same time because it has been leaking like crazy lately. After 15 months the poor little thing is wearing out and won't stay closed. Surgery is scheduled for 7:30 am so that means we have to be at the hospital at 5:30 am. If everything goes as planned Milo will be able to come home after the procedure, so let's all pray that Milo behaves himself. Of course if we have to stay at least we will be among friends :0)

Tuesday, May 13, 2008

ONE WOBBLY STEP

10 days ago that’s how it began, with one wobbly step. His one wobbly step has turned into one pretty steady step which he practices often and has progressed into several wobbly steps! Today Milo took about 6 small sort of wobbly steps in the middle of the living room. Boy did he have a grin on his face as he did it, he is so proud of himself. He gets so excited he topples over but he has been trying more and more each day. Watch out when he is proficient at walking, there will be no rest in this house. Chasing him with the ventilator will turn into a full time job from a ¾ time job. Grandma and Grandpa sent Milo the coolest Radio Flyer walker wagon. It has a handle for him to hold onto and push his wagon which can hold his ventilator, battery and oxygen. He loves to walk up and down the sidewalk in front of the house all by himself. He can make it half way down our long block and back. It really is pretty neat, it is most independence he has had. Milo has also learned a new trick…he thinks it’s hilarious. When his ventilator circuit gets in his way or is holding him back he reaches down and yanks it off. He is very proud of his new trick and quite honestly he is so cute it is hard to be mad at him. He yanks it off and starts crawling away just as fast as his little legs will take him, then he will turn around and smile as you are trying to untangle the ventilator and catch up to him. We have had battles when I catch him doing it which usually end with him crying but still attached to the ventilator. The lesson doesn’t seem to carry over though, he still get free on a regular basis. The good news is that he is not in any distress when he is unhooked for a minute or two. In fact we had another PEEP study done which showed some more improvement but did confirm that he does still need the ventilator. We should find out how much we can adjust the ventilator by the end of the week.

DID SOMEONE SAY FOOD?

Milo is getting much better at eating his baby food. He is consistently eating about 20 oz of baby food each day. We were able to cut back on formula a little bit and hopefully soon we will be able to cut back more. He is gaining weight and getting taller. He weighs at least 19 pounds and grew an inch since coming home. It’s true, these guys really thrive when they get out of the hospital. We are continuing to add new foods into his diet slowly but he is still kind of limited in the variety of food but he doesn’t seem to mind. He hasn’t been very interested in drinking from his sippy cup, we have to work on that if we expect to get that g-tube out! Holy teeth, the boy has a mouth full. I can count 6 on the bottom that are through and his 2 eye teeth are breaking through. On top I know he has 4 front teeth and I suspect 4 more but he doesn’t open wide very often & I’m not sticking my fingers in there!

IS THERE A NURSE IN THE HOUSE?

Yup, we have 2 nurses that cover 5 days. We used to have 3 but one didn’t work out L Still no night nurses but it hasn’t been too bad at night. I find that Milo ends up in my bed more often than not. It’s easier and we both get more rest that way. Some nights he starts out in his crib in his room with me on an air mattress in his room and some nights he starts out in a little crib in my room but it almost always ends up with us in the same bed. He’s a bed hog though, especially on the air mattress! It’s not the breathing that keeps him up it’s the eczema and the itching. It’s a good thing we have day nurses though. It gives me a break, a nap, the opportunity to run errands and it gives Milo someone else to play with. He seems to like his nurses even if he gives them a hard time occasionally!

ECZEMA & CURLS

What might eczema and curls have to do with each other? Well Milo has the best crop of longish curly hair on his head but it is preventing any type of medicine or moisturizer to reach his scalp. His poor little head always seems to itch. Baby oil can relieve it for a little bit as can Benadryl or other oral anti-itch meds but this darn dry scaly scalp is driving both of us nuts. I’m afraid the beautiful curls may have to go but I’m not willing to give up just yet. Any ideas?

THIS LITTLE PIGGY

My boy has a foot fetish…he loves toes, feet & shoes. His, mine, or anyone’s who walk though the door. People get freaked out with him touching their shoes because they feel they are too dirty for him to touch but he doesn’t give up until he checks them out. I have to remind people that their “dirty” shoes are walking all over the floor he is crawling on then they lighten up a bit and allow an inspection so Milo can go on about his business. Milo’s cousins came to visit for a weekend and the first thing he did was go after Dylan’s toes. She wasn’t too sure she liked that but his persistence paid off. She let him get her piggies then he crawled right up into her lap, from there on she was alright with his curiosity and they played together really well. The boys took a little longer for Milo get comfortable with, they ran around after being cooped up in the car and Milo wasn’t too sure he liked that but after a while all the kids were playing nicely. It was so cute to see Owen and Milo sitting side by side in the recliner, giggling at each other. Boy do I see trouble in the future. Brett took his role as protector and every time Milo’s ventilator alarmed he made sure someone knew about it. I tried to convince him to just hook Milo back up but he didn’t think that was a good idea. At one point Milo’s trach was pulled back just a little and Brett could see the hole, I think he was kind of curious and grossed out at the same time!

IT’S BEEN 6 WEEKS ALREADY!

Some days it seems like Milo has been home forever and the hospital is a distant memory and other days it seems like Milo just came home. I am impressed that we haven’t had any major hiccups only little ones.

WHERE’D YA GO?

I know some of you probably though we fell off the edge of the Earth by the lack of activity on this blog. We didn’t, well maybe I fell off the edge of cyber space but I think I have crawled back onto the ledge. Not far enough to be out of danger of another fall but I think I have my footing and hopefully will post more often. Still no high speed internet so no pictures but hopefully Milo will give me a break long enough to get that figured out on the phone. Oh yeah, there is a neat feature on this blog that gives you the opportunity to leave comments (or berate me into posting more info) for us. Just below the post it shows you the date and time of the message and just beside that it says 0 comments (or a number if someone has already left one). Just click on the comments word and you can leave a message; we’d love to hear from you guys!

Sunday, May 11, 2008

REFLECTIONS

Today is Mother’s Day. A year ago I wasn’t sure I would be celebrating this day in 2008 with my little boy. A year ago today Milo was recovering from his 7th (and last) episode of having to be fully resuscitated. A year ago today I was wrestling with the information doctors had given me a few days before—Milo had a 10% chance of getting out of the ICU and that was being generous. A year ago today a neurologist came into his room in PICU to tell me that my precious little boy had moderate to severe brain damage and he would never be a normal child. This is why today is such a miracle. As I write this my son is not only out of the ICU he is happily playing on the floor in his own home. Not only does my son not show any signs of brain damage, he seems quite smart at times (I know he could have learning disabilities later). This little miracle is catching up to all the normal milestones for a child his age. Yes he does still have some obstacles to overcome. He has his tracheostomy, is still dependent on a ventilator to breathe and gets most of his nutrition though his g-tube, but he is a miracle! He is proof that God is in control, that man and science and doctors do not always hold the answers, that sometimes faith is all we need. God has a plan for each one of us even if we can’t see or believe in it at times of crisis. God has a plan for Milo, for me, and for all the people who have crossed paths with him. Some parts of his plan have already seen and I am certain there is so much more in store for us.

Today as I celebrate my miracle, my son, I can not help but think all the mothers who’s children lost there battles and the mothers who are in the PICU wrestling with similar situations this year. Please pray for these people to receive the guidance and peace they need as well as thank God for the miracles he has preformed.

Friday, April 11, 2008

10 DAYS AND COUNTING

A year ago today Milo had surgery to receive his tracheotomy, it hardly seems like it was a whole year ago. Today Milo has been home for the hospital a record 10 days in a row. He is doing really well, soaking in his surroundings and exploring more and more each day. Last year I could never have imagined how the year would unfold. My expectation was that he would have surgery and in a week we would be on our way home to Colorado Springs. The doctors thought that just the tracheotomy would be enough to help him breathe easier, they really didn't think he would need to be on a ventilator long term. Fast forward a year and Milo is finally home and is still on the vent. Just goes to show you that medicine is more of an art than a definite science.

MILOSTONE--Milo stood up all by himself in the middle of the room today. He was squatting (which he has been doing for several days now) and just stood himself up. He looked very pleased with himself then fell down. My cousin Curtis and his wife Candace were here for a visit at the time and we all cheered for him. I expect that we will be seeing a lot more of this in the days to come. He has been letting go of things and standing independently for a couple of seconds here and there. He will also walk while holding hands, sometimes with only one had. I am so excited for him to learn this skill like all the kids his age but on the other hand chasing him with the ventilator will be that much more of a challenge!!

Milo has 3 doctor appointments on Tuesday afternoon so we will be spending a bit of time at The Children's Hospital but this time in the outpatient clinic area. Of course we will be stopping by the 8th floor to say hi because we both miss you guys so much. His appointments are Special Care clinic at 1:40, Pulmonology at 3:00 and Allergy at 4:00 and we will be by after that. If his isn't too crabby maybe we will be able to stop by the PICU as well.

Eating has become much more enjoyable for Milo. He is eating like a champ, at least 7 ounces of baby food 3 times a day. In fact he ate so much in addition to all the formula he always gets that he was miserable the other day. I have cut him back a bit with the baby food until we can talk to his doctors about how to balance food and formula so he won't feel like he ate Thanksgiving Dinner every day! It's not a lot of fun to see sweet potatoes squishing back out around a g-tube and it has to feel horrible...

Well I'd better go for now and get some rest before the race begins again in the morning :0)

Monday, April 7, 2008

THE LONG AWATED UPDATE

Sorry it has taken me so long to update, it has been a busy crazy couple of weeks! First of all—MILO IS HOME!!! Now let me go back and start a little more than 2 weeks ago and fill you in on the craziness that has become our lives. Friday March 21 the nurses held a “Going Home” party for Milo. He was completely spoiled and got more toys to entertain himself with. There was cake and drinks but allergy boy couldn’t play with any of that. It was such a nice gesture from the nurses and other trach-vent families. They will miss us but we will miss them just as much! Easter Sunday Milo had a visit from Dr. Joy Browne who did a neurodevelopmental assessment with him. We don’t have the results back yet but I can tell that he has learned SO much since his last assessment in December. On Monday March 24 two of Milo’s home care nurses came to meet him and learn a little about what they would be getting themselves into. By the end of our time together they both decided that they would love to help take care of Milo and this step, in my mind at least, was the final step to getting Milo out of the hospital. On Tuesday I was able to take Milo to Build-A-Bear in the Cherry Creek Mall with the help of Cloy, Milo’s rehab respiratory therapist (he rocks)! Milo did great in the car, he loved all the bumps in the road, he giggled and laughed with Cloy all the way to the mall. Walking though the mall was no big deal and the glass elevator was a hit even though it didn’t go nearly as fast as the one in the hospital. Build-A-Bear was a big hit. It is bright and colorful and so much going on. We picked out a monkey to customize for Milo. I brought an extra trach, g-tube, and broviac so the monkey could look just like Milo. The people there were wonderful, a nice lady named Michelle took all the pieces and preformed surgery on the monkey before stuffing it. The stuffing part did traumatize Milo, the noise of the machine put him straight over the edge. Poor little guy it took quite a while to calm him down but the good news it that he didn’t require extra oxygen to get over the event. For a time afterward he really didn’t want to have anything to do with his monkey but he is quite enamored by it now. Cloy decided that the monkey’s name was to be Olim and so it is. Milo & Olim are quite a pair. Olim was quite a hit with all the doctors, nurses & therapists at the hospital too. The beginning of this week Milo’s home vent came in and he was transferred to that one with no problem. It is almost the same one that the hospital uses, the oxygen just goes in a little differently. On Thursday March 27 I traveled to Colorado Springs one last time to work. I didn’t technically quit my job at Memorial Hospital, it just downsized from part time to Per Diem, meaning that if they need me and I am available I can work. I don’t expect to do that much or for quite a while but we will see what happens. This weekend was a blur of moving things out of him room and getting ready to go home. On Saturday the hospital lost power several times but luckily his ventilator has an internal back-up battery so it wasn’t too big of a deal. I will say that I haven’t seen nurses move that fast since Milo was misbehaving almost a year ago. Nurses came running into all the vent kids rooms and all the kids just looked at them and smiled seeming to ask “What’s going on?” Doctors came by to check on them and so did the respiratory therapists. On Sunday we had a little excitement, while the nurse was flushing Milo’s Broviac it got a little bubble on the side of it, it looked like the thing had an aneurysm. His nurse called surgery to come take and look and fix it. It took them quite awhile but they finally came and decided to repair it. It’s not a bad procedure, they don’t even have to touch Milo and just do it in his room but Milo HATED it. He screamed and screamed until it was done. While he was screaming we noticed a big chunk of something hanging on Milo’s gum and it has a white “something” attached to it. The doctor wasn’t sure what it was so we had a dentist come look at him on Monday. Turned out it was no big deal, just a hunk of gum tissue came loose and the white thing was just gum tissue that had lost blood flow. He is teething so it was probably just pushed out by the upcoming tooth, which still hasn’t made its appearance. So now we made it to Monday March 31 and Milo is scheduled to go home the next day. It started out as a pretty normal day and Milo was playing on the floor. I look over at him to see what he is doing and the repaired portion of his broviac was on the floor! I immediately got him to his bed and clamped off the portion still attached to him because it was an open line directly to his heart. Luckily it didn’t bleed a whole lot. Again his nurse called surgery and eventually they came to fix it. Milo is still not pleased with the surgery people and he again SCREAMED the entire time they were trying to fix it. Just as they were finished they tried flushing some saline through it the thing broke apart where they just fixed it so again Milo had to be held down screaming while they went for repair #3. This time they decided to flush it before finishing the glue job. While they were doing this one of the doctors was standing on Milo’s tube and he couldn’t breathe so he arched his back and pulled it apart again. They quickly finished and said they would be back when the glue was dry to try to flush it. Luckily it flushed so Third Time Was A Charm :0) This brings us to THE BIG DAY! Milo’s nurse got him up and discovered a broviac piece laying in his bed. Both of us started to freak out but realized it was April Fool’s Day right away. Nice trick who ever did that, you almost go us!! We were scheduled to leave at 11:00 and at 11:15 we walked out of the door to the room that had been Milo’s home for the last 7 months. The hall was lined with doctors and nurses wishing us well, I think I saw a tear or two as well. We were home by 11:45 and Milo settled in pretty well. Grandma & Grandpa escorted us home and stayed for a while until Milo fell asleep in his very own crib. Meeting us at home was Cloy and Andy (the guy from the home respiratory company) who set up his ventilator and made sure we were good to go. Not long after that the nurses and their supervisor arrived for training. They were he a majority of the afternoon and as they were leaving a delivery guy arrived with yet more stuff for Milo’s care. Finally by 8:00 that evening we were alone in our home for the first time in 1 year. Milo was admitted to The Children’s Hospital on April 1st 2007 and discharged on April 1st 2008. This was a much better April Fool’s Day than last year!!
We’ve been home for 6 days now and Milo has discovered so many new things. He has learned the simple joy of playing with refridgerator magnets, seeing his reflection in the glass on the entertainment center, looking out the font window, pushing buttons on the TV, swinging and sliding in the back yard, watching Mom cook, taking a bath in the bathroom (we won’t mention how many times he pooped in the tub), playing with toys in his room, spreading all his books across the living room floor, crawling up the 2 steps from Mom’s room to the kitchen, climbing on things, crawling down the hall way, trying to walk down the hallway holding on to the wall, getting stuck under the kitchen chairs, helping to fold (or unfold) the laundry, watching the front loading washing machine spin, he is babbeling more and more each day and coutless more things. Medically he is doing great. He trach has come out twice but we got it back in with no problem. The cords on the ventilator limit his range and he does get frustrated with that when no one is paying enough attention to know when to move it for him. We have 3 nurses who are wonderful. Milo is not fond of me leaving the room when they are here but as time goes on he will get to know them and everything will be all right. In fact the nurse we have today has been here 3 days now and Milo has warmed up to her a bunch. In fact I got to leave the house for about 1 ½ hours today while Milo was napping. This has been a very long post and I’m sure I have forgotten more than one thing so if there is anything you are curious about just leave me a message and I will try to answer it. I’ll add pictures and when I get my DSL straightened out, dial-up takes way too long!


Milo wanted to say “HI” too
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Sunday, March 23, 2008

HAPPY EASTER & Meeting Nurses Tomorrow






We hope everyone is having a wonderful Easter! Milo found the basket that the Easter Bunny left for him. In the basket he found a book, bubbles, a stuffed monkey, duck & bunny and the eggs he colored yesterday. Milo tossed his eggs around to the point they ended up in the trash. He is allergic to eggs so I figured once they were cracked up he was done with them.

Tomorrow we get to meet the nurse the agency is assigning to us. I sure hope it goes well because if all goes as planned Milo gets to leave the hospital exactly 1 year from when he got here, April 1st -- no joke :0) There is lots to do before he comes home. His room in finally done, hardwood floor installed, painted, furniture in & pictures hung. Now we have to figure out how to organize all his extra stuff. It is amazing how much stuff comes along with Milo!! Now the rest of the house needs a good cleaning, grocery shopping needs to be done, his carseat needs to be put in the 4runner, all kinds of fun things. The biggest task will be moving all his stuff out of his hospital room, we moved right in so everything he owns is at the hospital. Right now we will have a nurse for 12 hours a day (during the day not at night) for 5 days a week. I am still looking for night nurses, I think I have found someone who can do 1 night a week. Definitely a start!
Well better go for now, Milo needs untangled yet again ;o)

Monday, March 17, 2008

Rumor Has It....

Rumor has it that Milo may be able to come home in the next few weeks. I understand that the home nursing agency has found day nurses for 5 days a week. If this works out that is enough help to get him into his own bed in his own room in his house very soon. Cross your fingers and says prayers. I should have a better idea of if and when this glorious event will happen by tomorrow afternoon. We have a care conference with all his doctors, therapists & nurses at 11:30 Tuesday.