Been Too Long!

Cass has grown a lot since his decant. He's going to be celebrating his 6th birthday this summer! I still count my many blessings everyday that he's here and I thank Father in Heaven for lending him to our family. He still has quite the personality, Mr. "I'm going to do things my way and get a reaction from everyone". He is just wrapping up his kindegarten year and has made great progress in just the past several weeks. He is still playing catch up with his peers, but he is showing he wants to work and he knows he has to work hard.
Cass is a big brother now. After 5 years of being the baby we were blessed with a healthy baby girl whom Cass seems to not be able to keep his lips nor his hands off of. He adores her and she him. In fact when we told him and his other sister and brother that we were having a baby, instead of the jealousy we expected, he shouted "Yay!! I'm not going to be the baby anymore!"
He is in a great program in our district where he gets therapy and lots of one on one time. The teacher to student ratio is low and they try to incorporate him into as much of the mainstream activities with the typical kids as possible.
He has glasses now, has had them for about a year and everywhere we go people stop us and say "He looks just like the kid from Jerry McGuire" or "Stewart Little". He is still so lovable and tender. Forever my little boy!

See mom, all gone!! No more trach!! 

Happy trach removal!! Going for a ride around the floor, showing off naturally. 

Last picture before trach removal. He was crying because we wouldn't let him play with the nurses equipment. What a sad face! 

Day of Trach Removal!!!

Sorry I left all of you in suspense of what happened. Cass had his trach removed (de-cant) on Monday July 17th. What a week it has been, finally feeling like a normal family. He was such a stinker going into the bronch, was really showing off for the nurses.
After the bronch they removed the trach and admitted him into the hospital over night just to watch. The doctors and nurses wanted to keep him hooked-up to the monitors, but Cass had other plans. He ran around the floor all night and was yelling and jabbering the whole time. He wanted to play and not cooperate for the nurses.
Tuesday afternoon he came home and he was happy to not have the trach anymore. We celebrated all day and are still on a high from the joy. Cass moved out of his room downstairs and moved in with his big brother James where they share bunkbeds now. They both think it is really cool and are thrilled to be together. James has waited for this for a long time. We're all adjusting to the new found freedom from the trach and I have to say the only thing we miss are the nurses that cared for Cass. They have become a part of our family.

My first trip to the Beach 

It's my birthday and I'll do what I want. 

Happy 2nd Birthday!!

Just wanted to let everyone know Cass is doing really well. This spring he had throat surgery to make a little more room in his airway. He has started walking, now running and we're just trying to keep up with him. Cass has discovered food!! He loves to eat which is a trait carried over from my side of the family. He is growing like a weed and we are loving every moment of it. He has not been fed by the G-Tube for over a month and last week at weight check he had gained. Yippee!! Maybe by the end of the summer he'll get his feeding tube out. Today he is going in to have a bronchoscopy and as long as everything looks good he'll have the trach removed. We are so excited.
Friday was Cass' 2nd birthday! We decided to celebrate it two weeks from now since grandma and papa are out of town, but we'll celebrate having his trach removed too. So if you think of it, celebrate with us, have your own little party and think of Cass while you're doing it. Thanks for all your support and prayers on his behalf and ours. We'll keep you posted on today. Thanks!

Happy, Happy, Happy! Always happy! 

I'm so big and cute! 

Christmas 2005. What a beautiful bunch. 

Making Strides

Cass has had quite the fall. Since his bronchoscopy in September he has had one infection after another. It's been a matter of what antibiotic will work and not destroy his intestines at the same time. Today he is feeling pretty good. He's home bound again for the winter which will decrease what he's exposed to, hopefully. I can tell he's getting cabin fever when he even gets excited over going to the doctors, just as long as he gets out.
He's had a series of ear infections this fall that we just can't seem to get rid of so 12/22 he'll be having tubes put into his ears. This will help greatly with his hearing, eating and speech therapy, at the same time cutting down the ear infections.
He's growing and getting quite big. He crawls everywhere now, the freedom to explore. His last doctors appoinment on Thursday he weighed in at 23lbs. 3.4oz so he's growing. He's doing well with PT, OT, and Speech/Eating therapy, though with the last we're trying to get him to put food into his mouth instead of everything else.
He's quite the tease and loves getting reactions out of his big brother. He laughs whenever he does this.
We had his fingers looked at by a pediatric hand surgeon last month and we found out he doesn't have any joints or ligaments in his pinkies. His left pinky will probably be alright and not be injured too much because he can bend it at the hand but the rights pinky doesn't seem to have a joint at the hand either and will bend back to his wrist. It's more prone to injury so maybe in the future we'll have to look into having it removed. The tip of the nail the doctor thinks he can fix and remove the nail on the bottom side of the pinky. His left ring finger we had a splint made to try to uncurl the finger. Hopefully this will work. His feet we have an appointment sometime next year to see a specialist. Maybe his feet are the reasons for him not walking, we'll see.
Otherwise, we're all doing pretty well. It's great to watch the kids get all excited about the Christmas season, even Cass knows something is going on. He loves to go look at the tree and all the lights. A couple of weeks ago we had a pretty good snow and watched the flakes fall from the window with excitement. I took outside just so he could see it close up and he had a ball touching the snow and making footprints as he walked around in it with my help. The two older ones were excited because school was cancelled.
How blessed we feel to be here at this time of year and be able to say we're happy and doing so much better than at this time last year. May you all have a blessed and happy Christmas.

July 28th, 2005

Cass is doing great this summer. He has grown leaps and bounds, becoming our little butterball. It's amazing when you look back to his pictures last year and compare them to his 21 lb body now and see the difference. He has recently started sitting and can go from sitting to laying down then back to sitting up. The problem is his hips rotate too much causing him to do the splits when he lays down then back to sitting. We're working on it. He's happy and hasn't had any set backs. He is really enjoying the outdoors.
His birthday was great. We were worried he wouldn't touch his cake but as you can see he proved us wrong. We ended up with cake all over the kitchen, himself and the chair. It was great. We went to MaryBridge to visit the nurses and doctors and brought a cake for them to celebrate his birthday with him. They were so surprised to see how big he is and how well he is doing, especially when no one thought we'd be here a year later. What a great day to celebrate!
Since his heart surgery he's been real busy. Quite the explorer he is, wanting to get into everything. He does a lot of things just to get other's reactions to him then he laughs. He isn't blue anymore either, though he still requires oxygen every so often. He's really making improvements and we feel so thankful. Thank you all for your support!

He did a pretty good job at destroying this cake 

Cass' first birthday, enjoying his birthday cake. Who says he has a problem with food, maybe everything just needs to be made out of chocolate. 

PDA closure device

Try this web site for a pdf document of the device used for Cass' PDA closure.

http://www.heartmedical.nl/english/produkten_catalogus/pdfs/cardiology/nit-occlud.pdf

Cass had a 6 x 5mm Nit-Occlud. His PDA appeared to be completely closed after having the device in place for just one hour, according to his surgeon.

Cass was a little groggy and tired, but we left the hospital after just 4 hrs of recovery time and he appears to be doing fine. Wow!! heart surgery as day surgery; isn't modern technology amazing....Now if we could only figure out how to count votes in an election.

PDA surgery complete

Cass is now sitting in the recovery room. He was tired and cranky so he's getting some sleep. The rest of us just wish that there were enough beds for all of us. He did fine through surgery. The doctor said that his PDA was a little smaller than they had expected. They used a newer device to close it up. I need to get the name of the device to let people know what it was. He'll have a 6 month and 12 month check-up with his cardiologist in Tacoma, but that won't be out of routine. We are hoping that this will be the start of a lot of good changes. We'll update everyone more later.

Ryan

6/15/05 What a spring!

I have not been the best at keeping up this blog for Cass, things have been busy.
Cass is doing great. He finally hit 20lbs this month, getting rounder every day. He is still so very happy but has come to realize that we come and go without him and he does not like to be left behind. He is definately letting us know what he likes and dislikes. What a character. He has started trying to talk over his trach especially when his brother and sister are around and he wants to play with them. This month has been a month of reaching goals. He has also started sitting up on his own which we are so thrilled with. He hasn't started crawling yet but hopefully by the fall we'll be there.
Today we are up at Children't Hospital in Seattle for his heart surgery. They are closing his PDA with a catheter which will hopefully help with the oxygen requirements. I'll let you all know how it went after they're done. The beeper they gave us to call us back to recovery just went off so I'll write more later.

Monday March 28th, 2005 (March Madness)

Sorry I haven't been real good at keeping everyone up to date. This past month has been crazy. Cass had his scar tissue removal surgery in his airway on the 14th and everything went well. In fact we got the go ahead on his stomach surgery and hernia surgery. Since then he had a problem with his hernia which we couldn't push back. He also had an episode of apnea and a short stay at the hospital where it wasn't determined what was happening and why he's having so many episodes. Today was his scheduled appointment for his operation for his Fundoplycation (stomach surgery to stop his reflux and aspiration problem) and his hernia/ascended testicle operation. After three hours the good doctor finished and so far everything seems to be going well. He's just alittle groggy, uncomfortable, and just wants to sleep, in his bed. But he'll have to stay at the hospital probably until next week to recover. He'll have a nice long scar across his belly right under his rib cage to remind him of this experience. He can tell old war stories with his friends. We have been blessed with the good care he has been receiving and couldn't ask for any better. Thank you all for your words of comfort and love. We rely so much upon our dear friends and family, we don't know how we would handle it without you all. And of course how could we do this without our Father in Heaven.

Easter Picture of kids in their Easter outfits. Don't they all look adorable. This was about the 20th picture taken and they did so well. What a good looking group of kids I have, too bad it skipped a generation before.