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...

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)

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.

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...

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?

"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?

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!

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.