HAPPY BIRTHDAY CHARLIE !!!

The big man turns uno today. We'll post some pic's later of his rage'in party tonight and update you all on how great it is to be home. Thanks for the continued support.

We're home :)

Turning on the cochlear implant. It took 2 hours for programming and teaching. Dr Such-Neibar stopped by because she was expecting him to be more irritable but we didn't see any change.
Testing the car seat to make sure it supports his head. When we came in to the hospital he was in an infant carrier but since he has grown we needed to upgrade


Coop was so sad to say goodbye to the "baby whisperer" Janine
Goodbye Shannon- We will miss you
Rob had been looking forward to taking Coop in the wagon ride ever since we got here but we never made it so I had to use it to take him to the car just for a picture. Daddy- Coop has missed you this week.
Britt woke up from his nap and was really excited to see his little bro was home. He immediately went and got a stuffed animal for Charlie and placed it in his bed and then tried to tickle his toes when he was fussing. He's going to be such a great big brother.Sweet dreams.

Coop has done fantastic since yesterday morning. He has had several hours where he has been awake and calm. He slept the whole way home and was great pretty much all day. The home health nurse came by to set up the feeding tube and assess him. She said everything looks fine so we probably won't need to see her again. He is also set up to go to speech therapy, physical therapy and occupational therapy once a week. We go back to see Dr. Such Neibar in one month and will get the g-tube changed to a smaller button at that time. Last night it took me 30 minutes to figure out the 8:00 medication but luckily I have already gotten better. Charlie did really well throughout the night and today with only a couple periods of fussiness. I am loving having him home again!!!

Last Day :)

This morning has been a whirlwind. Charlie threw up again last night at midnight, the exact time he did the night before. It was after being off of feeds for hours so I haven’t really found a connection yet. We’ll see what tonight brings. This morning we went up to the audiology department for 2 hours to program the implant. He slept the whole time so the audiologist programmed it to average comfort zones. We are supposed to experiment with 3 different programs and different volumes over the next two weeks and meet with him to reprogram. The process usually takes 6 months to find the correct program with a healthy person so Jason thinks Charlie could take a year to find the right parameters and teach his brain to recognize it. We are looking to be leaving around 1:00 this afternoon. I will definitely keep posting about our transition however it will be less frequent so please be patient while we figure out our new normal. Thanks again for everyone’s support and love. We rely on it daily!!!

GOODBYE PCMC. We will miss you!!!

Last Night at PCMC :)

Well, as I sit in the hospital for the final night I have a bitter sweet feeling. I don’t think it has hit me that we are actually leaving. My car only knows how to get to the hospital and home anymore. We have been looking forward to this day since we came into the hospital and now I hate to leave even though I have been well prepared. It’s like the training wheels have been taken off and we are now supposed to ride by ourselves. The freedom will be great but I liked the reassurance of something to fall back on.

I have been a little crazy lately with getting all of the last minute things figured out for our return home so I haven’t posted much (or returned phone calls- sorry everyone), but not much has happened with Coop either. He has been pretty well behaved today and even slept through his bath. He has had a lot of his new friends stop by for some last goodbyes. Everyone is so sweet! I feel such a strong bond with the people here because they have helped Charlie get better and I can feel the love they have for him.

To everyone involved in Charlie’s care at PCMC. THANK YOU!!! And WE LOVE YOU!

T Minus 1 day!

Coop is having a nap right now while Meggie is doing some rocking. He has had some PT this morning in his room in an effort to learn to live without the gym. Last night our little man was able to hurl (threw up) to the end of the bed so Auntie Susie is going to get a bath on the afternoon schedule. Grandma Kathi reported that his tummy has been a bit rumbly today so we are grateful for the venting tube. The goal is to blow this joint tomorrow afternoon, but we aren't going to get too excited yet as Super Cooper has a way of doing things his way!

Thanks for all the prayers and support. Keep your fingers, toes, (and maybe eyes) crossed that all goes as planned.
--Auntie Susie

The End is in Sight :)

He had another good night and has been awake for 2 hours and is semi-content. Our plan is to start getting everything in order for discharge on Wednesday afternoon. We have ordered more of the venting g-tube bags so hopefully they will arrive by Wednesday. The ear surgeon came by and said everything looks good so we are clear to turn on the cochlear implant. We will meet with the audiologist on Wed for the programming. We are also having the eye doc come check out his vision before we leave so we know where we stand. We are excited to finally have a discharge date!!!

3 month Anniversary :)

Today Charlie has been in the hospital for 3 months straight. Here are some pictures to compare. He now weighs 24 lbs (19.4 lb when we came in) and is 29 1/2 inches tall.

3 months ago this is how Charlie looked. An IV in every limb, breathing with a vent and not doing any voluntary movements.

This is how he looks today. Only 2 tubes and 1 will come out tomorrow

IRob is not allowed to be by Charlie because he has a cold. He hates it, but maybe I can convince him to post from home but in the meantime I'll update (Angel). Charlie had a great night, only waking up once at 4:00am. He is now fully titrated over to the g-tube (all of his formula is going in his stomach) so the tube in his nose will probably be removed tomorrow. We will keep him on continuous feeds even after we go home and then down the road we will try bolus feeding (feeding all at once like meals). I haven’t seen any liquid or air in the bag yet but he is tolerating his feeds well so the venting tube must be working. Rob bought Coop some flavored lip smackers (chap-stick) to encourage positive feedback for sucking his lips. He seems to like sucking on his bottom lip.

Susan and John spent their "date night" visiting with Coop!Cami Poulson Lane (married Rich Lane). Rob and I went to school with Rich. Such a small worldLouie & Rodrigo- the coolest kids in PCMC. They have races down the hallway in the middle of the night and Rob is often found in Louie's room playing guitar hero until the wee hours of the morning. We will miss them.

Since the weather is so nice today we went outside for a walk to let him get some fresh air. Charlie hasn't been outside for so long and he really seamed to like it. By the fountain in front of Primary Children's Hospital

I saved this picture for last because it was my favorite part of today. When he was basking in the sun his pupils reacted and became the same size as mine were at the time.