Saturday, November 20, 2010

Decisons, Decisions...

It's that time of year again to start thinking about Christmas cards.  I contemplated making my own cards this year but in an effort to simplify our holiday season I settled on the ever popular photo card.  Now comes the hard part...Shutterfly has so many new and wonderful cards this year, I'm having a hard time choosing a design!  Ususally I pick out a card and make sure to take pictures of Milo that complement the style and colors.  So off I went to choose a card (click here to see the many choices) do I want folded cards, flat cards printed on heavy cardstock, cards printed on photo paper, 4x8, 5x5 or 5x7 and then there is the style; traditional, religious, contemporary, full of color, few colors, oh and how many pictures, they have styles to accomodate between 1 and 6 photos.  After a long debate with myself I have decied on this style, but who knows, we'll see after I take the Christmas pictures of Milo :0)  One of my favorite things about the cardstock is that it is made from sustainably forested trees.

Why Shutterly you might ask?  I have always recieved wonderful quality in a timely fashion from them.  My favorite Shutterfly project was a photo book I made about Milo's medical story.  I wanted to remember the whole story and be able to share it with others.  The book I recieved was wonderful!  So professionally printed and bound.  So far I have ordered 3 hard back copies, one for Milo, one for me and one for my mom.  I am contemplating making another one that is geared toward preschool/Kindergarden age for Milo.  I also made some small soft back photo albums for my nephews and niece of their vacation time with us.  They were a hit!  Shutterfly makes it easy, choose simple path and they will do most of the work for you or fully customize the book yourself (my choice because I'm a bit of a control freak).  I have also made calendars and photo mugs for Christmas presents that have turned out beautiful.  They also have greeting cards for about any occasion.  I especially love the cards who's proceedes benefit the American Lung Association, Heifer International, and LIVESTRONG.  I just saw graduation announcements too, for everyone from preschool graduation to college graduation!

Oh and if you have a blog and would like to earn free holiday cards from Shutterly click here to learn how.  Even though I wrote this post to earn some fabulous free cards, everything I have said is absolutely true :0)  I really do love Shutterfly!

Tuesday, November 2, 2010

Trick-Or-Treat!

For Halloween this year Milo had laryngitis, his poor little voice was hoarse and squeaky.  Since he seemed to be getting sick we didn't venture down to Alamosa as we had planned.  Airway swelling + higher altitute = nervous mommy.  For two years in a row now we had planned on trick-or-treating with his cousins but again our plans didn't quite pan out.  The good news though is that Milo never got horribly sick, no fever just some extra chest junk but he handled it quite well.  We ended up going to Boo at the Zoo on Sunday for some trick-or-treating and that was more than enough for Milo.  He was nervous about all the people in costume at first but by halfway though the zoo he felt better about the whole situation.



Milo's Loot

Eeyore at the Zoo



 
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Noel (Elmo), Faith (Snow White) & Milo playing in the corn
The middle of October we had a Trach(less) Kids Halloween Party...we only had one kiddo with a trach but 3 that used to have trachs.  We had a great time, the kids were super cute in their costumes.  I put dried corn in Milo's water table and it was the hit of the party.  The kids loved digging in it, filling containers & finding spiders, bats & skeletons that were hidden.  Not long after everyone left Milo had the whole thing emptied on the ground...we will have the fattest squirles in the city :0)
Jen & Faith (Snow White), Janay & Milo (Eeyore), Tina holding Noel (Elmo), Lily (mailbox), Dustin holding Landen (horse) & Marissa (Minnie Mouse) and Jeremy
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Owen, Milo, Brett & Dylan

The beginning of October Milo's cousins came to visit.  We went to the circus which Milo didn't like all that much, it was crazy LOUD.  The next day we went to Nick's Garden Center for their Fall Festivel.  It was the first weekend so there were not many people which worked out great.  The kids played in a hay maze, jumped in the inflatables, played bean bag games, rode a train & had their faces painted.  It was a great time!



Milo the kitty


Wednesday, October 6, 2010

A Perfect Day for Portraits


This morning was the perfect weather for taking photos outside.  Overcast days are great, no harsh shadows & no squinty eyes.  I asked Milo if I could take his pictures today and he said yes so I jumped at the chance.  We got ready and went to a great open space near our house with great backgroud opportunities.  He is now in the phase of trying to smile but it doesn't always come out so great.  I was able to get some pretty good pictures of him today.  I hope you enjoy!

 video

Friday, September 10, 2010

Changed Perspective

A while back I saw this short video on TV and realized just how much my perspective on life has changed.



When the little blue bird tried to make noise and that horrible stridor sound came out of him I immediately said "that bird needs a trach, he can't breathe!".  It was a feeling from way down deep that caught me off guard when I heard that noise.  Then the little sneezed out a feather and all was fixed, if only a sneeze would fix kids who sound like that :0)  Now I don't know if the people that made this video thought of this and did it purposefully or not but WHY is the bird with breathing issues BLUE and the smallest one too?  Just made me realize how much my world has changed in the last 4 years...

Monday, August 30, 2010

eat popcorn!

Yesterday I discovered that Milo likes popcorn.  We were at the mall in the play area, when he was done playing he wanted to go to the popcorn stand right next to the play area.  I told him I didn't think he would eat popcorn and he said "eat popcorn!" so I gave it a shot figuring the $3 would be worth the experiment.  I got him the cheesy kind because he likes cheese crackers and he ate it, and ate some more.  We went to the car and I filled his snack cup and he ate it all.  I filled it 2 more times yesterday.  Today I filled it 3 times too.  Guess that'll teach me to underestimate him :0)

video

His speech is coming along too.  You can kind of hear him answer me in the video.  By the way I LOVE those snack cups.  He can't spill the stuff out of them...well very easily anyway.
This afternoon we went to the hospital to visit Faith.  She got out of the PICU yesterday and wanted to play with friends & we were definitely up for that.  Faith is doing great, so great that she was discharged from the hospital today!  Original plans would have kept her in for about 3 weeks but her wonderful ENT (who also happens to be Milo's doctor) altered plans a bit.  Check out her blog to see all the details and to see how great (and adorable) she looks with her naked neck!  Milo was very cute playing with her today, he was very patient and well behaved.  He tolerated all the nurses saying "hi".  I think he is a little too comfortable in a hospital room!  Here's a picture of the two of them, it was hard to coral both of them long enough to get a picture.

Sunday, August 22, 2010

Prayers & Popsicles

First I'm asking everyone to take an extra minute and say a little prayer for Milo's friend Faith.  She is having surgery tomorrow to reconstruct her airway so her trach can finally be removed.  It's a big surgery, she will be sedated for about a week to allow for healing.  The recovery can be long.  Please keep Faith, her wonderful parents, the surgeon (who worked wonders with Milo's airway this summer), nurses and all those who will care for Faith in your prayers.  I'm sure tomorrow will be a very long day for all.  Faith & Milo lived in the hospital together for a very long time and Faith was the first child of the same age that Milo ever interacted with, Faith and her family hold a special spot in our hearts :0)




So far so good with preschool this year!  He's been a bit teary-eyed when I drop him off but all reports are that he is doing wonderfully.  Friday they had a "picnic" for snack time and the kids got Popsicles.  I was sure that Milo did not eat one but the teacher looked at me like I was nuts and said "sure he did".  Umm, excuse me, are you sure your talking about Milo?  Both the teacher and the special ed teacher assured me that yes Milo did eat Popsicle although he did make faces.  I tried all summer to get him to eat one with no luck.  So today I decided to test him out, I got a Popsicle out of the freezer and sat down to eat it.  He came right over and tried to take it from me and sure enough he licked it and took a couple of small bites.  I quickly ushered him outside for the inevitable mess.  He didn't eat a lot of it but more than I expected he would.  I can't wait to see what else he comes home doing...

Wednesday, August 18, 2010

1st Day Of Preschool



Today Milo started preschool for this school year and I couldn't have been more proud of him. He walked from the car to his classroom door (although he did try to go to his classroom from last year) and waited patiently for the teacher to let the children in the classroom. He walked right in and was met by his speech therapist, Steve, and never looked back. It's a new room, a new teacher, new kids & a new routine so he has to adjust to the new routine but I bet he'll get there before long. When I got there to pick him up the teacher called is name to meet me at the door and it took a minute for him to come. What a change from last year when he was charging out the door the minute it opened or cried sitting on the carpet if a teacher attempted to keep him where he belonged. His teacher said he had a great day! He walked back to the car holding my hand and most amazing of all only had 2 small temper tantrums between getting home and bedtime. Milo is in afternoon preschool this year which I was initially hesitant about but after thinking about for a while I decided that it just might work better. The afternoons is when he needs more structured activities and preschool fits the bill. I think he was a bit tired after school today :0)

Last week we had the opportunity to meet his teacher and see his new classroom. I was prepared to go into this school year fighting for Milo's needs. After 1 hour with his teacher I am hopeful that no "fighting" will need to be done. I can't tell you how relieved I was/am. This year's teacher, Ms. R, is a much better fit for Milo than last year's teacher. We were able to talk about Milo's medical issues, allergies and where he stands developmentally as well as behaviorally. He was not happy about the visit and clung to me, cried, and screamed for the majority of our meeting but finally settled down and played with a few toys. Ms. R is absolutely fine with Milo having a comfort item with him in the classroom, something last year's teacher was definitely opposed to. She assured me he would get the help and attention he needs to learn to follow the routine and be re-directed when necessary. Most importantly she seems excited and up to the "challenge" that Milo will bring into her classroom. He will have the same speech, occupational & physical therapists as last year but will have a new Special Education teacher. The Special Ed teacher is new to this school & has also taught deaf/hard of hearing children so she is fluent in sign language. After the big stink about Milo's lack of accessible communication I put up at the end of last year I find it no coincidence that the new teacher knows sign. Ms. R also knows a bit of sign language and both feel it is a good bridge for speech delayed kids as well as thos learning to speak English as a second language. That being said it is amazing how much Milo talks now. He tries to say most words and much of the time will sign at the same time which makes it easier to understand what he is trying to convey. I'm sure being in a classroom full of peers will spur his language skills even more.

At our meeting last week the teacher explained that on Friday a folder will go home with that weeks art work, newsletters, therapy notes, etc. I love that idea but had one problem. Milo's backpacks are all too small to fit a standard size folder in. He has several and I tried them all. Standard size backpacks are way to huge for his little body to be able to carry. I scoured the stores and the Internet and couldn't find any backpacks that were in between toddler and school-age size. Finally I did find a pattern (http://www.made-by-rae.com/) so I could make one, it was toddler size but had instructions to enlarge it to fit a standard size folder. It turned out great! It is probably just a little big for him but is lightweight and definitely manageable.

They are easy and kind of fun to make. What do ya think? Could I sell these?

Monday, August 9, 2010

"The Out-Of-Sync Child"

In the end of July Milo had another well child visit to his pediatrician. He is growing and gaining weight! Although he is still small for his age he is 35.5" inches tall and 29 pounds. I expressed some concern about Milo's behavior (mainly his temper tantrums) and the pediatrician suggested that we have Milo tested for Sensory Processing Disorder. He is definitely high risk for SPD (high stress during pregnancy, birth trauma-not breathing for him, early surgery, lengthy hospitalization). Milo will have tantrums out of the blue with no rhyme or reason, he can't seem to recover from these by himself. He has no fear when climbing on things and he climbs on everything, very frustrating for me. He is always on the move, he never stops! Circle time was the worst for him at school. I've taken him to story time at the library and as long as I'm in very close proximity to him or have a hand on his leg he will sit otherwise he would be up running around. He also throws everything, sometimes out of frustration and sometimes because it's "fun" and today was a day of throwing EVERYTHING he could get his hands on. He wakes up in the middle of the night and can't get back to sleep on his own. I've watched him on the video monitor trying to go back to sleep for an hour before getting up and coming to my room. He changes position, bangs his foot on the mattress, etc. If he lays down with me he wants my arm over him and falls right to sleep. I moved him into a full size bed from a toddler bed and it has nearly eliminated him coming to my bed but he flops around all night long and takes advantage of every square inch of his "big boy" bed and I know he wake up frequently. Some days he is so wound up that I put him in the car and go for a drive. I don't know if it's the confining carseat, the motion of the vehicle or both but it calms him down. Chasing him all day is exhausting and not much gets accomplished around the house.

While doing some internet research on SPD I came across a book called "The Out-Of-Sync Child" by Carol Stock Kranowitz. I looked for it at the library but there was a fairly long wait list for it so I ended up buying it and it was definitely worth the price. I read the whole thing in less than two days! While reading the book and watching him I could see some red flags and while I don't think he has a severe form I really hope some Sensory Integration therapy can help. His pediatrician gave us a prescription for an Occupational Therapy (OT) evaluation including sensory and luckily we were able to schedule the eval pretty quickly and I received the official report the end of last week. At the end of the assessment the OT wasn't gung-ho on the sensory diagnosis but sounded more confident in the written report and has recommended therapy both regular OT and sensory therapy. The catch is that Children's Hospital has at least 4-6 week waiting list for therapy especially at the main hospital and 4 days a week of preschool limits our availability too. The outlying clinics could probably get him in sooner but they are all at least a 45 min drive. A friend of mine has recommended another facility that provides therapy so I will check into that option soon. "The Out-Of-Sync Child" (and it's sequel) has examples of helpful activities and exercises to help SPD kids but there is such wide range of sensory issues I think he needs formal therapy and then we can integrate some activities into our daily routine. I guess adding OT will not be the end of the world if it helps him in the long run.

So that's what's been going on at our household the last few weeks along with some fun outings, road trips, house guests & getting ready for school. Milo starts preschool again next week already...where DID summer go?

Sunday, July 25, 2010

2 New Milostones! No, Make That 3!!

"Mama, Look"!
It clicked, he finally got it. It's like turning on a light switch when he gains a new skill. He has figured out talking. "Mama, Look"! Those are the words I heard clear as a bell from the backseat of the car a few weeks ago.


He saw a playground and wanted to stop and play, unfortunately it was a daycare so we couldn't stop. He tries to say most words now and is successful at many of them. Of course it's like any kiddo learning to talk, maybe only a few people really understand but he is getting better by the day. His sign language vocabulary has increased too. If he won't attempt to say a word he will sign it & sometimes he signs and talks which really is a big help. The other day I asked his speech therapist if she knew the sign for pillow, she didn't and couldn't find it in her big reference book either. The next day I remembered to look it up on the computer and did the sign once while I though Milo was playing in his room. He obviously saw me because yesterday he was signing pillow as he carried a pillow around the house all day. Oh, did you see the lollipop in the pictures above? Occasionally he will put new food type things in his mouth! The lollipop didn't last long for any one attempt but he went and found where he left it a couple of times that day. He will now eat crunchy rice crackers too. I think he ate half a package today. Then there is the good old standby, shredded cheese. Talking and eating...2 very important milostones.
1st Decanaversary
Last Friday, July 23 marked one year without a trach! It's been an interesting year and not without it's bumps in the road. I am happy to report though that Milo had his 4th bronch in 5 months about 10 days ago and magically all the offending scar tissue has disappeared! I think Dr. K was just as surprised as I was. Well surprised might not be the right word, anything is possible with Milo and we both know that but we definitely were not expecting that good of an outcome. We are back to the "call me if you need me" status with Dr. K, now that I know what "needing her" looks like I am confident with that directive. Now we are on to conquer more pressing developmental issues...more info to come on that topic!

Wednesday, June 30, 2010

Milo's Summer Theme Song

All is right with world as long as Milo can play outside! I saw this on Sesame Street this spring and found it quite fitting for my little nature boy. I can't help but smile when I hear this song. The days he can't play outside are very long and difficult for both of us. He has been enjoying water play in the sprinkler, the water table & his kiddie pool as well as digging in the dirt. He drives his tricycle around, he can almost reach the pedals :0) He likes being outside by himself too. Yesterday he made it clear that I was not invited outside with him so I took to peaking out doors and windows to make sure all was alright.

Saturday, June 26, 2010

The Nitty Gritty

I know it has been way too long since I've updated the blog...I was reminded that there are still snow pictures and it is now officially summer. Well, there's lots to say, so much in fact that I don't know where to start. Most of the time I just give up after staring at the computer screen for awhile but today I'm going to take a stab at getting something written. At least part of it anyway, the medical part, which is probably the most boring but has the biggest impact on daily life. Deep breath, here we go!

Airway

When I last left off Milo was scheduled for a bronchoscopy in early April. That bronch got moved up to March 17th and I was given about 15 hours notice. It was a whirlwind of a night and definately gave me less time to stress over it. This bronch showed severe narrowing of his trachea near the bottom where there is scar tissue from his very first surgery when he was a week old. Here's the picture the surgeon gave me, the black spot is the opening and it should be much bigger, the white above it is the offending scar tissue. You can also see that his trachea is more a tear shape than round like a "normal" trachea.
Dr. K was able to use a balloon to open up the area. It was very stubborn and took inflating the balloon 7 times to get any results at all. Inflating a balloon will stretch the scar tissue and cause little tears which should then firm up and hold the trachea open. Here's what it looked like after the balloon dilation, it's a little red and irritated but the opening is much bigger now:
This scar tissue has been there for basically his whole life and it had been stable for over 2 years and now it is causing issues again. This part of his trachea is well below where a standard tracheostomy tube can reach and so far no talk of re-traching. Pulmonology also joined in and took a look deeper into his lungs and got a sample of secretions to culture to make sure there was no deep infection brewing, and there wasn't. Milo didn't appreciate this part so he was admitted overnight for observation. Here he is finally resting in his room.

In April he went back again for another bronch to check on that scar tissue and not suprisingly it had grown back. This time Dr. K used a laser to remove the tissue and put in some medication that is supposed to keep scar tissue from forming. Here he is waiting in pre-op playing with his toys. It really is hard to keep him enteratined in that room.
He was admitted to the hospital and ended up staying for 4 days. He needed oxygen longer than normal after surgery and sounded horrible. He was rattely, like he needed to cough secretions up but he just wouldn't cough very much. His pulmonologist, Dr. D was the attending that week so get got a little more attention than normal to fine tune his treatments and try to keep his airways clearer.
He came home with a CPT vest that shakes all the junk loose from his lungs and airway so it is hopefully easier to cough out. It does help some but not as much as we had hoped. Here's a video of him in the hospital.
video

By the 4th morning Milo was ready to go. He found a pretty blue button with the word "code" on it and pushed it, everyone came running. He was amused :0) they discharged him shortly after that. In May he went back for another bronch which showed the scar tissue had grown back somewhat despite the drug used last time. Milo was treated to more laser but this time he was able to come home that day. He continues to sound like he needs to cough most of the time. His normal secretions get stuck on that scar tissue and he has a hard time getting them up. He is scheduled for another bronch mid-July, we'll see what's going on then.

Heart

Last Monday Milo had his annual heart catheterization. I'll have to say this procedure is one I dread, almost more because of the recovery than the procedure. He has to lay flat on his back for 4 hour afterward. Ever since he was tiny he knew everything was alright as long as he could sit up after a procedure, an IV stick, surgery, trach change, etc. We wrestled him for about 1.5 hours before I nearly demanded they find a drug that would work to chill him out. They had already tried the normal versed, valium and dalaudid which worked for about 10 min each. Finally they gave him a combination of dalaudid and benedryl which worked and he finally rested for most of the rest of his 4 hours. At the 4 hour mark he popped straight up on the bed from a half awake state and there was no holding him down after that. The results were a mix of good and not so good. He still has narrowing in both of his pulmonary arteries (they take the blood from the heart to the lungs to get oxygenated) and they did not respond to the balloon dilation (I sence a theme here). The good thing is that his heart is not really suffering from it. The pressures are higher than they should be but not danerously high so we have time. Ideally they would like to put in stents to hold those arteries open and he is big enough for that now. The only problem is that when they tried to dilate the right artery his breathing was affected. The theory is that the artery then pressed on his airway (bronchus) in his right lung and collapsed it. The doctor recommended that Milo have a CT scan to figure out his unique anatomy and then a plan can be made. He said that should be done in the next 6-12 months so while it is important this be fixed, we do have time on our side.

Bones

Yup bones, this is new territory for us. In December Milo saw a genetic doctor to try to figure out if he has a "syndrome". I have mixed feelings about this but that's a subject for a post all on it's own :0) I took him to this appointment confident they would find nothing and boy was I wrong. Turns out he has funky bones, like the technical term? Seriously he has a form of skeletal dysplasia also know as dwarfism. Now if he follows his current growth pattern he will be around 5 feet 4 inches as an adult so I hardly consider that dwarfism. It was also noted that he has osteoporosis so he is now on rather large doses of vitamin D so his body can use the calcium it is getting. Milo has been refered to the new Skeletal Dysplasia clinic at Children's Hospital but they only see 4 patients a month so I suspect it will be several months before he is seen. This clinic is comprised of several specialists (probably all the remaining ones Milo hasn't seen before) that try to put everything together to come up with a more specific diagnosis and medical treatment plan. If they can't come up with a diagnosis they will send his information on to another doctor (in California I think) who is apparently the guru of skeletal dysplasias. I still think he is a uniquie kiddo and doesn't have a "syndrome" or maybe it's a new one they will name after him :0)

The Belly

I am proud to say that Milo's stomach really hasn't been an issue for a while now (knock on wood). He had the stomach flu in February and some mysterious something 2 weeks ago but other than that he's been doing well. He continues ot take his daily reflux medication and I'm not messing with that! We still avaoid certain foods that we know or suspect he may be allergic to. He is starting to eat by mouth now (that's a story for another post) and all those allergy foods are hard to avoid.

Skin

Eczema may very well be the most annoying ailment we deal with on a daily basis. He is itchy a lot of the time. When it got hot his skin flared up pretty bad but we quickly got it under control. The oral steroids he is taking for his airway also help the eczema. His arms look 1000% better than last year and his legs are clearing up as well. The red patches on his cheeks are gone most of the time but if they do appear they are less noticable. Recently I took him off his daily dose of zyrtec and he has had no increase in itching. He still gets an antihistamine at night but I am trying to wean him off that as well because I don't think it helps either. He still does need to be moisturized twice a day and every now and then we have to use a steroid ointment but over all it's not as bad as it could be.

Well this has been a very long post, thanks for hanging in there with me. I do have lots more to tell ya and hopefully I'll get to it soon!

Wednesday, March 24, 2010

SNOW DAY!!!

video

We woke up to lots of snow this morning which closed the schools so Milo has now had his first official "snow day"! Of course we were supposed to have a meeting at the school this morning to go over his IEP so that was a no go either. We had a great day playing in snow in the morning and again in the afternoon. Milo is so much better about touching the snow with his hands. I also learned that he likes to eat the snow, now to teach him the color yellow and to not eat yellow snow. By late morning the sun was starting to peek out and it was quite warm so I didn't bother fighting with him about a coat or mittens. He did have snow boots and fleece lined overalls on so he was quite warm :0) He was so cute trying to figure out how to use the snow shovel. Every now and then he would stop what he was doing and sign "snow" and try his best to say it. He is trying so hard to say words but most of the time all that comes out are the vowel sounds so it takes me a minute to figure out what he means but it is definately a step in the right direction.

Thursday, March 4, 2010

A Not So Gentle Reminder...

This week life gave me a not so gentle reminder that Milo's medical journey is not completely behind us and he still is medically fragile. On Tuesday Milo had a routine pulmonology appointment, he hasn't seen the pulmonologist since last September I think. I didn't expect much at this appointment, pretty much just a yup everything looks good and we're not making any changes to medication until respiratory season is over. Well that's not even close to what happened. The appointment wasn't until 4:30 so we ran some errands in the morning including a haircut for Milo then he had speech therapy at 1:15. I told him we would go to the park before his doctor appointment since it was so nice outside. I noticed that he was starting to wheeze a bit as I was getting things together to leave so I decided to give him a breathing treatment to head off whatever was going on. It usually takes about 20 min to see the full effect of this medication so we hung out for a bit before we left. I have noticed that at times he does seem wheezy and then he will be better in 10 min or so and sometimes he breathes a little fast for a bit but then returns to normal so I did want to ask the pulmonologist about this anyway. He was still sounding pretty wheezy when we left but I figured he'd settle out of it in the car on the way. He played for about 10 min and I decided it was time to head to the hospital because he still sounded bad and was using his neck muscles to breathe. We took our time and picked up a prescription at the hospital pharmacy before heading over to the clinic but we were still 15 min early. We checked in and very efficiently saw the nurse. The doctor came in shortly after that (we usually wait 30 min to see her) and was obviously concerned about what she was hearing. Now by this time the wheezing was considerably less and let me assure you he was his normal active curious self the whole time. In fact she was so concerned she almost admitted him to the hospital but ultimately decided to send him home with a whole bunch of steroids and had us get a chest x-ray before we left. I called yesterday to get the results of the x-ray and it looked alright, no pneumonia. Today I found out that he will have a bronchoscopy with both the ENT and the Pulmonologist on April 9th. I'm not really looking forward to that because once again life could unravel depending on what they see. The results could be anything from it looks fine to something is definitely wrong. Personally I'm hoping it's just an allergic reaction to something so I have limited his diet even further and watching what is going on around him. It could be mucus accumulating in his abnormal trachea so I'm giving him extra water to try and thin them out. It could be that the scar tissue is getting worse or that his collapse (malacia) has worsened it instead of getting better as it should. Oh and not to mention the heart cath that he needs this spring/early summer to see what needs to be done about his pulmonary arteries. I feel like I've been transported back in time 3 years when these were the exact same issues we faced. We're definitely in a better place since Milo can breathe effectively on his own but the fundamental issues remain...some day this will be resolved, I hope...

Monday, January 25, 2010

Potty Training: Day 3

What a day! I am exhausted and so is Milo. In fact he fell asleep before 6:30 tonight, this potty training thing has been hard on us both. I definitely can not say he has been potty trained in 3 days. However, I do not see this as a failure of the program. The determination one very stubborn 3 year old is more of a reason than anything. Today had mixed results. Once again he woke up to a dry bed! He had 2 successful trips to the bathroom, one of which he took me there rather than me taking him when I think he is about to go. He told me had to go one other time but nothing happened and there were countless accidents today (I chose not to count). I was getting very frustrated by early afternoon but then he had a success which is what I needed to keep on going. I KNOW that he knows what to do and now we are in a power struggle. I tried to keep it from getting there but he has one strong will and a very large bladder for such a little guy. I however refuse to go back to diapers or pull-up and will win this battle, no matter how much "stuff" I have to mop up and how much laundry I have to do. The preschool teachers are going to love me!! That being said I think we need to get out of the house tomorrow so after breakfast and little time for him to "do his thing" we will go the grocery store and maybe stop at the park if it is nice. I'm packing a bag and will clean up whatever I need to :0)

The house is cleaned, the floors steam mopped & the bathroom sanitized so now it is time for me to shower and get to bed. Since Milo went to sleep not longer after his dinner I expect to be up in the wee hours changing sheet tonight :0)

Sunday, January 24, 2010

Potty Training: Day 2

Once again Milo is finally asleep and day 2 has come to an end. The day started out great with a dry bed! From there he had an "almost" accident (finished in the potty) and a big success with a start to finish #2 in the potty. It was a great morning. The day disintegrated from there, he had 1 more "almost" accident & 3 complete accidents, and one more I missed while grabbing dinner out of the microwave. So it was better than yesterday but I really hope tomorrow is better! He still hasn't told me he has to use the potty I just catch him in the act. Tonight I asked him if he could tell me when he needs to go potty and his answer was "no". He is fully capable of telling me, he can sign potty and say Mommy, but his answer is still was . It's not a huge surprise but explains why he hasn't said anything.

Off to clean up and then hopefully bed time for me!

Saturday, January 23, 2010

Potty Training: Day 1

It's been a long and tiring day but if this works it will be well worth it! I'm ready for a shower and bed after I clean up the hurricane that Mr. Milo created today while I tried to entertain him all day. Milo's asleep now so day 1 of (hopefully) 3 is pretty much done. Since this is an all or nothing type program that means he is sleeping in his undies. Hopefully the bed will stay dry but again not holding my breath and am prepared with clean sheets & jammies. We've had 8 accidents today and only 1 of those we made it to the potty before he finished and I was peed on once. Can't say I expected much more but I have definitely learned a few things today. First of all thank goodness for hardwood floors and steam mops! Definitely wear shoes, not just socks or bare feet, it makes running to the bathroom with a wet kid and cleaning up puddles much more pleasant, nothing worse then stepping in a warm...well you get the picture. Milo will pee if he puts his hands in running water, that one was kind of funny. I've also learned that I'm not so good at being "glued" to my kid, which I'm almost embarrassed to say being a former trach mom who had to be with her child at all times. I missed two accidents today, that's a big NO-NO with this program. I'm supposed to catch him in the act every time. My goal for tomorrow is to be better about that. Rewards and positive re-enforcement don't seem to be doing much for him so I need to re-think what I'm doing there too.
All or nothing, huh. Yup, the program says to throw away all the diapers so you aren't tempted to use one and so the child knows they are gone. Well I have this problem with throwing away things that others can use so I modified this rule a bit. Milo & I loaded all the remaining diapers and pull-ups into a box and left it on our step for the "diaper fairy" to take to little babies who need them. The diaper fairy exchanged the diapers for a book & video for Milo, he was excited to see his prize. So that box of diapers is still sitting outside beside the step where Milo can't see it and the diapers are so cold I wouldn't dare put one on him :0)



He's so cute in his little undies, even the smallest size I could find (2T/3T) are baggy on him. Some I even have to roll the waistband and they still sag. Socks on the kiddo are not such a great idea either :0)

Friday, January 22, 2010

Adventures In...Potty Training

It's time, I think he's ready...even if he says he won't use the potty. I've been pondering this whole potty training thing for months. I came across an advertisement for a 3 day potty training method and I was intrigued. Seriously, 3 days, who wouldn't like that. I was a bit skeptical about it, how harsh would it be on the little guy. Of course all the reviews on the site were positive so I sought out other peoples opinions. I can honestly say I only saw good things about it. Maybe the kid wasn't trained in 3 days, it may have taken 4 or 5 but hey I'll take 5 days over months and months any time. The website says you have to follow the plan 100% for it to work and she does offer mentoring via e-mail usually answered the same day. I gave in and got the e-book and I'll have to say that it seems like it should work and it's really gentle on the kiddo. Don't get me wrong it's not for wimpy parents at all, it takes 3 solid days of constant vigilance and lots of patients, not to mention dozens underpants (no diapers, pull-ups or padded training pants allowed)! So I have prepared for my 3 day lock-down with Milo. He has 25 pair of undies, big boy wipes, a new toilet seat so he won't fall in, and lots and lots of "reward" material. It was hard coming up with rewards for a kid who doesn't eat, the standard M&M reward won't work here. I came up with stickers, which he usually doesn't care too much about, and putting a penny in a special piggy bank, which he LOVES to do. I have a couple of "bigger" rewards for the end of the day especially if he remains dry. I have stocked up on little games and toys we can play with together and got a couple of new movies to watch. Of course what kind of a mom would I be if I didn't sneak some therapy type activities in there too :0) Oh yeah, I got some caffeine and chocolate for myself...this will be a long weekend!
One of the things about potty training I have dreaded the most is the potty chair, I don't want to dump that thing out and wash it...ick. Then there are the kind of padded little seats that fit on the regular toilet but again, yuck, those have to be moved when a big person uses the potty. I found a great solution, it's called the Family Seat. I ordered it from One Step Ahead. It replaces your existing toilet seat and has the lid, a little seat and a big seat all in one. I got the plastic one since it was cheaper and the little seat magnetically holds on the lid. I'm sure I didn't do it justice trying to describe it but you can go here to get a better description!
Milo had to help with the installation

Must try it out! No falling in here.

Well I'm off to re-read my 40 page e-book once more for inspiration. Wish us luck! I'll try to report in over the next 3 days to let you know how it's going and if it was worth the $24 e-book.

Tuesday, January 12, 2010

Officially Discharged

from Home Nursing care that is. The nursing supervisor came today and took away his chart, it was good. We haven't had a nurse since before Thanksgiving so really nothing changed today with the day to day stuff. We will keep in touch with our wonderful nurses, they truly have become part of our family.

Tammy & Milo May 2009

First of all I want to thank our two wonderful nurses who had been with us since the day Milo came home from the hospital. Tammy & Shirley you guys are the best, thank you so much for all your help! Having a medically complicated kiddo requires a lot of vigilance, add in Milo's activity level and boy does it make for a busy & some times crazy day. Hauling around Milo & all his "stuff" was no easy feat in the beginning. I don't think I would have made it through the last 19 months without you guys, or at least not as calm and rested as I was :0)


Shirley & Milo November 2009

On the other hand there a lot of things that are nice about not having nursing care. First is that I don't have to get written doctors orders for every little change in medication, food, therapy, etc. I feel like I don't have someone (the agency not our in home nurses) watching over my shoulder second guessing every decision I make about Milo like when he is sick enough to go see the doctor or if he really needs to go to the ER for falling and bonking his head on a toy and getting a eighth inch cut on his scalp. I know that all of this was to cover the nursing agency in case something major came about but it is nice to know that all the decisions are mine to make without having to worry about what the agency thinks about my decisions. And ya know what? It make us that much more of a "typical" family although still far from normal.

As I mentioned earlier we haven't had any nursing since just before Thanksgiving and things have been going quite well. There was some adjusting to do though. I learned to take a shower at night while Milo sleeps because leaving him to the house for even a few minutes is no good, did ya see the picture of him in the sink in the slide show? I was in the bathroom for less than 2 minutes! I always left Milo with a nurse to do the shopping, not so much any more. He goes where I go and he's learning to like it, slowly. He hates riding in shopping carts so the seat belts are my best friend, his worst enemy. Now that he is in preschool 2 days a week I can hopefully get most of that stuff done while he's at school so I don't have to torture him so much.

Today was a significant day in life with Milo. Another day I couldn't wait for nearly two years ago. Today went by with little fan fare, it was a normal day. Now we just have less paperwork in the house and have reclaimed the shelf where the chart & paperwork "lived".

Wednesday, January 6, 2010

You've Come A Long Way Baby....

From this:

January 6, 2007
Still In The Hospital ICU Step-down Unit

To this:

January 6, 2010

First day of Preschool

Milo's first day of preschool went about as I expected. He did not like having to follow directions or participate in group activities. I stayed with him today to make sure he would be alright (breathing wise was my main concern) and although he threw himself on the floor several times he did okay, not great but okay. His favorite time was play time of course, he played nicely with the other kids and was visited by the occupational therapist. It was cold and snowy today so no outside play time which was a bummer because he has been talking about the playground for days. They did go down to the gym but he refused to do anything but cry, poor guy was just out of his element and didn't know what to expect. He sat nicely for snack time although he didn't eat a thing, he did play with his snack and had a sip of water. At the end of school the kids gather on the carpet one last time. Milo sat much better this time :0) The teacher draws a picture and the kids "help" her write a sentence or two about the picture. Today she drew a picture of Milo and he recognized himself, it was a proud moment. Their story was: Today we have a new friend. His name is Milo. Then it was time to go home. School lasts all of 2 hours and 45 minutes and he goes 2 days a week, Wednesday & Friday. I think in about 3 weeks he should have the routine down much better. So Friday will be an interesting day. I have decided to just drop him off and see how he does without me there. The teachers will have their hands full that's for sure! I tried to keep as low a profile in the classroom as possible. When he couldn't find me he cried but I imagine he will be fine...eventually :0)

Milo's least favorite part of the classroom:

The Circle Time Carpet!

Monday, January 4, 2010

What Will 2010 Bring?

As I sit here I am trying to think about December 31st, 2010 and what wonderful things will unfold over the next year.

I have a few hopes for this year. I hope that Milo will find his voice just a little more. It can be verbal or with a communication device, as long as he can tell me what is going on in that little head of his. We've been struggling with tantrums lately that I can best attribute to not being able to communicate and be understood. He's doing a great job with sign language but he can not communicate with the general world around him. I am very grateful for the amount of communication that he does have though :0) I really really hope we can get his eczema under control, by far it has been the most irritating aspect of his medical stuff. I hope that he will learn to eat even just a little. Really it would be nice but I'm not pressuring this at all. He is more interested in eating or at least playing with food which is a step in the right direction. He requests to be in his highchair to eat cheese or whipped cream, it's definitely progress. I hope he blows the socks off of the preschool staff! He starts school on Wednesday, I can hardly believe it. At his evaluation he didn't feel like preforming the tasks he was asked to so I think it was not a great snapshot of his abilities. I hope he gets the hang of school and follows their routine instead of insisting on doing his own thing.

I know there are a few medical things brewing for Milo this year. In the spring he will have to have another heart cath so they can get another good look at his pulmonary arteries and how the narrow parts are affecting his heart. There can be several outcomes 1. Everything is great no further intervention needed right now 2. They can try to balloon out the narrow areas which they tried last year and Milo didn't tolerate well on his right side. 3. They can put in stents to help hold open the arteries but he is kind of young for this and they would have to be expanded and possibly replaced as he grows and again he may not tolerate this either 4. This is the biggest and riskiest--another open heart surgery to cut out the narrow areas, really it isn't a surgery on his heart but that's the best way to describe it because it will require the incision down his chest, being put on a heart-lung bypass machine and his sternum being wired back shut again. I really hope this doesn't need to be done! The other medical issue that is being looked at is his genetics, to see if he has any genetic syndromes that might explain all his abnormalities. So far they haven't found anything but he has a few more blood tests and x-rays that I haven't heard back about. The genetics doctor is concerned about him being short, me not so much. If they find something it won't change Milo at all it just might explain a few things and give us some things to look for as far as growth and development. I've been kind of defensive about his genes which is kind of strange seeing how none of them are mine. I think it's because I don't want to hear that something else is "wrong" with him, he is perfect just the way he is.

Whatever 2010 bring us we will take it head on and thrive just as we have for the last 3+ years!