Wesley Starts School

My little Wesley is now big boy Wesley going to school. He started school 2 weeks ago on Wednesday, January 4, 2012. He is doing amazing there. He loves calendar time and apparently has a little girlfriend who reads him a book every day!!! He does have a nurse that accompanies him to school, so that makes things a little easier on everyone. He's learning to participate in group activities and beginning to learn how to socialize with other kids his age. He already knows his ABC's, numbers, shapes, colors, and many other things, so that is coming very naturally to him at this point.

He did amaze us just a few days ago and decided to walk around the house completely on his own. He was doing really well walking, but always needed that one adult finger to hold on to or the table to balance. Well, not anymore!!! He decides he wants something, now he can just get up and go! We are super excited about that. Will post a video when I have a good one available. But for now, enjoy the first day of school pics below!!!

Christmas

We were sucessful with our first Christmas at home for 2011!!! A very merry *Children's* Christmas to those who did not get that luxury this time around. Pics below!!!!

Wow, been a while since I've updated Wesley's page here!!! So, here are the big things... Wesley has learned his colors, numbers, letters, and shapes. He even does a little reading and sign!!! We are still working on walking, talking, and eating, but he has come a long way from when we first started. I have posted some of his pictures below and also putting some links for his YouTube videos. The first is a quick video of Wesley taking a sample of some food and the second is him picking out words from "Your Baby Can Read". So super cute!!! Wesley will have his preschool screening this Friday 09/09. Can't believe our little miracle is about to start school. We also have his 3rd birthday on 09/13, oh how time flies!!! Wesley has stayed pretty healthy this summer, let's hope that stays throughout the winter so we can get his trach out!!!!

Wesley Eats!!!

http://youtu.be/t4m5-iuFurU

Baby Can Read!!!

http://youtu.be/F0SVu9rZSvE

And Back to Children's

Wesley had a pretty good month for January, up until the last few days. His GI appointment and vent clinic both went well. We had to reschedule his opthamologist appointment, and now we will have to postpone that again.

Wesley started getting sick last Thurday night 01/27. His pulmonologist increased some breathing meds to see if that would help. He still wasn't any better the next day, so we took him to his doctor on Friday 01/28. He was really lethargic, running a low grade fever, had a really bad cough, runny nose, increased oxygen needs, and really high heart rate. Nothing we did seemed to make him any better. The doctor gave him a flu test, but that came back negative. He gave him some steroids and antibiotics.

He wasn't getting any better, so we called the doctor yesterday. He said that he should have showed some sign of improvement by this time, and it was best to get him to the hospital. Of course, the weather wasn't going to make anything easy for us. We had to have ambulance transport to one of the local Denton hospitals while he waiting for air transport down to Children's. Before he was transported, they did an x-ray on his lungs and performed a few tests to see what was causing his sickness. They determined that he has pneumonia pretty heavily in both lungs and tested positive for RSV.

Wesley and Dad arrived at Children's late yesterday afternoon. They will be carefully monitoring him and giving other antibiotics to help get him through this. He has been back on the ventilator since we took him to the doctor on Friday.

We were told this would be an extended stay..... not sure how long to expect on this one. Please keep Wesley in your prayers.

Sweet Brothers

No Cheeze

Home and Happy

Wesley got to come home last Wednesday, 12/29.... 29 LONG days in the hospital. He is doing well at home, incredibly happy and social. We have notice several changes, some good, some not so good. His feeds are going well, no problems there. His breathing is great! He has only needed oxygen once since he has been home and that was only for a few hours overnight. That was on Thursday night, but has not needed it night or day since. He is much more social and interactive than he was before he went into the hospital. Not sure what brought on that change, but it is a nice change. The one issue we have run into is that he no longer wants to walk or stand. He is receiving Lovenox injections in his thighs, and we believe that may be the reason he does not want to stand. He has a huge knot in his right thigh and several smaller ones all over. He will put some weight on his left leg, but avoids putting any weight on his right leg.... probably due to the knot. However, that should go away in time.

We finally got the official diagnosis that Wesley has a prothrombin factor 2 deficiency (unfortunately he can thank mom for those genes). What this means for him.... I'm not quite sure. We will definitely have to be prepared for Lovenox or other blood thinners for any future surgeries he may have (although we really hope that surgeries are not in his future). We will be going in for lab work on Tuesday, 01/11. He will need to have further evaluation done since some of his blood work may have been scued while in the hospital due to the lack of nutrition (from obvious reasons). We will also have our follow up appointment with his GI doctor that date.

So, we will have lab and GI next week, opthamologist the following week, and vent clinic the next week. If things continue on as they are, this should be our last vent clinic!!! Yay!!! I assume we will also have a follow up appointment with a hematologist once we get the results back from the blood work. This month is looking to be a busy month with appointments, but at least we are home!!!!