Guess what happened to Losh?!?!

Me and this sweet little guy spent some one on one time together because he had an early morning appointment with ENT. My mom kept the other kids overnight and we stayed at Nanny’s house to be close to the hospital.. 

Ill blog about our other adventures later but wanted to blog now about the appointment.

I really wasn’t expecting much to happen. I expected to leave feeling like nothing was accomplished but I also planned on asking them to downsize his trach (give him a smaller size) in attempts to get him closer to being capped and decannulated. In fact, Ive been pushing for decannulation (removing the trach) and probably driving the doctors nuts. The longer he keeps the trach, the more problems he will run into. There is risk with removing the trach – like if he needs it to be vented at a later time – but I’m trying to remain optimistic and deal with that when it comes. There is more risk in keeping the trach in.

So when the nurse and doctor came in today I told them how he has been doing (great) and that just the other day his trach was completely plugged off with secretions (making it where he could not breathe in or out through his trach and instead had to pass the air around the trach and out his nose/mouth) and I didn’t suction him out to clear his trach because he was doing well. He did so well in fact that I didn’t suction him out that entire day until it was bedtime.  He has done this multiple times in the past as well – not all day long, but long enough for me to know that he can breathe well without the trach.

Instead of offering to downsize the doctor asked about capping.

Heck yes! I don’t think I could have said yes fast enough. So they brought in this lovely little white cap and closed his trach off to see how he would do. This cap makes it where he cannot breathe in or out through his trach. Instead he has to breathe through his nose/mouth. The trach remains inside him, but there is enough room between it and his airway that he is able to move air around it.  He did great. His pulseox didn’t drop below 96.

We got the go ahead to cap him during the day. He cant be capped at night time though until he has a sleep study. He did really well today and he loves that he is able to make more noise. I always hate removing plugs from his trach because he seems to enjoy how he is able to talk with them.

For some reason I cant get the video to embed but if you click on this link below you can hear him talking to his pizza box.

Losh talking to his pizza box

The poor folks at Target had to listen to him talk non-stop but I just smiled and let him carry on. During the drive home he was yelling “Weeeeee!” and “Woooohoooo!” and I just continued smiling and laughing. His voice melts my heart.

So basically, this is a HUGE step in the right direction for him..  He will have to have a few surgeries before the trach can actually come out as well as a sleep study, but this is one step closer to that happening.

A celebration and stuff…

My gorgeous children waiting on the $1 movies to open.. They wanted to see Wreck it Ralph (again) but I talked them into Jack the Giant Slayer instead. Glad I did. It was a good movie.

We had a little time to kill so we snapped some pictures and went to a beauty/wig store a few doors down.. Glad I did. They had hair beads for super cheap! The stores in my town sell them for $3+ per box and this store was only $1.

Immediately after the movie we went to celebrate with my sister and her hubby, but we had to wait on them to get there.

*snap snap snap* while we were waiting patiently.. Then Abby had to go pee so we went ahead inside..

Signing the contract for Book Number 2.

AK Morgen

I ordered a chicken with rice and steamed veggies and 2 desserts   So tasty

Losh continues to thank all of you for the cards and birthday wishes. Hes excited to be 8 years old now!

Happy 8th Christmas Birthday Losh!

Most people who heard that the theme for his birthday party was going to be Christmas looked at us like we were crazy. Who in the heck has a Christmas themed birthday party? … Losh does! Seriously, all throughout the year he talks to “Santa” and his “elves” on the phone. He writes letters and gets responses from Santa. He even watches the Reindeer cam.  Its just a cute little phase and there’s no way I could deny him his Christmas Birthday party.

Perhaps the best thing was the food. We had traditional Christmas dinner with all the good stuff. Green bean casserole, sweet potatoes, rolls, corn, mashed potatoes, turkey, ham, meat pies and whatever Im missing  

Its been long since we all got together for a family picture.

When it was time to open presents I had Losh sit on the bench to “take some pictures”.. We were really just waiting for Santa to arrive.. The look on Losh’s face when Santa arrived was priceless. I captured it on video (though I haven’t looked at it yet). If I remember I’ll share it later. Being a Christmas party, he wanted a tree to put his gifts under. I planned on decorating it with ornaments but later decided to hang all of his cards on it instead. So many people sent him Christmas cards and birthday cards. I am always amazed at how many people care about Losh. It warms me to think that he has touched so many people in his short life.

You can see how much he loves Santa in this picture. I think its my favorite picture from the whole party. Too bad my camera has been so horrible lately.

He insisted that we write “Merry Christmas” and “Happy Birthday” on the cake.

He got a new ride on toy among other gifts.. Its perfect sized for him. He didn’t get off of it until he fell off. He stayed on it for about 2 hours just riding around, outside and inside. It doesn’t reverse and I think he was trying to back up when it just completely tipped over. Now he says “safety first” and wears a helmet.

Christmas was a perfect theme for him and Im really glad he chose it. It was one of the best birthday parties ever. I don’t think Ive ever seen him so happy.

I can’t believe my little boy is EIGHT!! There is so much to celebrate!