Cass Update

Been Too Long!

2010-05-25T21:39:00.001-07:00

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!

2006-07-25T21:58:00.000-07:00

See mom, all gone!! No more trach!!

2006-07-25T21:57:00.000-07:00

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

2006-07-25T21:56:00.000-07:00

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!!!

2006-07-25T21:40:00.000-07:00

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.

2006-07-17T08:20:00.000-07:00

My first trip to the Beach

2006-07-17T08:15:00.000-07:00

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

Happy 2nd Birthday!!

2006-07-17T07:43:00.000-07:00

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!

2005-12-17T08:40:00.000-08:00

Happy, Happy, Happy! Always happy!

2005-12-17T08:39:00.000-08:00

I'm so big and cute!

2005-12-17T08:36:00.000-08:00

Christmas 2005. What a beautiful bunch.

Making Strides

2005-12-17T08:04:00.000-08:00

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

2005-07-28T11:12:00.000-07:00

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!

2005-07-28T11:10:00.000-07:00

He did a pretty good job at destroying this cake

2005-07-28T11:08:00.000-07:00

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

2005-06-15T22:25:00.000-07:00

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

2005-06-15T15:34:00.000-07:00

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!

2005-06-15T11:03:00.000-07:00

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)

2005-03-28T17:46:00.001-08:00

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.

2005-03-28T17:46:00.000-08:00

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.

2005-02-28T07:08:00.000-08:00

James saw that Cass was having chocolate and wanted some too.

2005-02-28T06:49:00.000-08:00

This is a true test that Cass is really my son. Chocolate is key to happiness! He really enjoyed eating this day. He took the spoon out of my hands, wide eyed and licked the spoon clean. If he had the bowl, I'm positive he would have licked that clean too. We now know we have to dip everything in chocolate first!

Busy Week!!

2005-02-03T16:54:00.000-08:00

This week has been pretty busy with doctors appoinments. We went up to Children's Hospital to see a specialist about Cass' trach. He has some scar tissue below his voice box inside and outside around his trach. It has been bleeding but last Friday night it was bleeding pretty good and it was really irritating him. The scar tissue is partially blocking his airway so on March 14th he'll have surgery to have it removed. Today we saw his cardiologist and we were hoping for good news because his murmur has been sounding quieter so we thought it closed up. When we went in today his echo showed that it hasn't closed and has not changed. It showed his left side of his heart is a little swollen meaning that it is working harder. He also has excess fluid in his lungs because of this so his doctor put him on Lasics (sp ?). His doctor doesn't think it will close so we'll plan on having it repaired this summer. It was just kind of downer since we were thinking that his murmur was gone. Just not what we were expecting. He's gained more weight, weighing in at a whopping 14lbs 8.4oz. He is feeling pretty good and is becoming more interactive. He's not sitting up yet. In the pictures I was holding him up under the blanket. He is getting better control of his head. He can hold it up for about 10 minutes now when he is on his stomach. He really enjoys his brother, I think James is his favorite person. He sure lights up when James walks into the room. They are so cute together. I hope they'll be the best of friends. I'll keep you posted on how he is doing.

2005-01-29T13:10:00.000-08:00

Yes, I do have my parents wrapped around my little fingers.

2005-01-29T13:09:00.001-08:00

I'm so neat!!!

2005-01-29T13:09:00.000-08:00

Bath time!!

2005-01-29T13:08:00.001-08:00

Ready for the game

2005-01-29T13:08:00.000-08:00

A little elf.

2005-01-29T13:07:00.001-08:00

Cass' favorite toy!

2005-01-29T13:07:00.000-08:00

12/17/04

2005-01-29T12:49:00.000-08:00

I think these turned out great. The photographer came to the house and was wonderful. We've been wanting to have his pics taken but didn't know how we could without taken him out. He smiled and laughed in every one. It was a great day. They show his true personality. He is having a good week. He has finally doubled his birth weight at 14 lbs. 4 oz. six months later. The granulation tissue in his airway has really been bothering him causing him to cough a lot and bleed. Hopefully we'll be able to get in to see the specialist at Children's soon. His eye appointment went well this week, the optic nerve looked great and the shape of his retina looked normal but he wasn't sure if he has problems with the muscles surrounding the eyes because he does look crossed eyed. We'll go back in nine months for a recheck. He is still having a hard time being around people and having noise. His doctor wants us to expose him to the outside and different social experients. We still have to avoid big groups of people incase people are sick but we can take him outside when it is good weather. We took him and Lexi and James to the zoo on Monday when we had the 65 degree sunny day. It was a perfect day to go, it was really empty. He enjoyed it. He is still struggling with his lungs, it's like his lungs can't handle the weight gain. Atleast he is gaining...finally 14 lbs.!!!

A happy NEW YEAR!!! 1/16/05

2005-01-16T18:43:00.000-08:00

We are so sorry about not updating the blog in over a month. We didn't mean to worry any of you. We a doing fine. Our Christmas holiday was wonderful with family and friends. December was a tough month for Cass. We figured out his feeding pump was not working well when he wasn't gaining weight and was losing. We got him a new pump and since then has been gaining weight. He's now 13 lbs.
On Friday the 14th he celebrated his sixth month birthday. I can hardly believe it. A week ago Tuesday he had a broncoscopy to check out his airway. He has some granulation tissue that is blocking his airway. We'll be going to Children's Hospital in March for a second opinion. Thursday he had his feeding tube changed because the old one was leaking. He is doing great.
Alexis, James and I went on a two day trip with my parents while Ryan stayed home with Cass. The kids loved having mom all to themselves. It was a great weekend and we all missed Cass and daddy.
We thank all of our friends and family for your cards, letters and pictures. We're sorry we didn't get any out this holiday season, maybe we'll get out Easter cards. Thank you for your continuous love and prayers. There is power in prayer and we have felt that power. We love all of you on the East coast and wish we could see you more. We also love all those in the the Southwest and thank you for your love. We cherish all of you. I'll be better in keeping this blog updated.

12/2/04 Thanksgiving!!

2004-12-02T16:54:00.000-08:00

Lots has happened since the last post I made. The Friday before Thanksgiving we recieved notice that our insurance were putting Cass on medically intensive coverage and would not be dropped this month. Every three months they will review his case and adjust as is needed. With the agreement we had to drop our nursing hours from 21 to 18 hours a day. This also means that in three months the insurance company may decide to drop him then. But for now it means three more months.
Cass has doing okay. He's been losing weight and vomitting again. Thanksgiving was great with family visiting and helping out. Overall it was a great weekend holiday.
Yesterday was Cass' swallow study and it was great. He passed and can have thick liquids for therapy purposes only so he won't forget how to swallow and won't have problems with eating in the future. He can have about 1 Tbsp of pureed baby food to 1 tsp of formula to thicken it up 3 times a day. He's been doing great and has enjoyed rubbing it all over his face. He insists on sucking his thumb while he has food in his mouth. He really enjoys it and gets so excited when he sees that it is time to eat. He is still being fed primarily through the feeding tube and will continue to do so probably as long as he has his trach. He's doing great and is good spirits as always. I can't believe he is almost 5 months old.
Thank you for all of your support and love. Life now is starting to feel more normal, meaning we're getting use to life now. This past Sunday we had a lesson at church about modern day miracles and if there are any today. Though they may not be miracles like a fish feeding thousands, we still have miracles today that are just important. It depends on how we choose to look at events in our. We have had a lot of miracles in our lives and we are in awe with all that we have been blessed with. We have so much to be grateful for.

2004-11-17T22:18:00.000-08:00

We've been battling an infection this weekend and week in Cass' trach. He started an antibiotic last Thursday but a bad reaction to it by Friday night so we had to stop it. The doctors want to wait to start another to give him a rest, meanwhile he's not feeling to well. His weight is up to 11 lbs which gives us reason to celebrate, even though he is still in the 3% for his weight.
Today we met with SSI (Social Security) again. This time they gave a denial letter and said that they couldn't help us because we made too much money even though they agreed that nobody could afford Cass' medical costs. We hoped for the best, but expected to be denied, but we wanted it in writing. We're trying to get him on DDD (Division of Developmental Disabilities) but it seems as though any government program, state or federal, is denying us because of income. Eligibility is based primarily on income and not upon the disability. I think the system is pretty messed up. We don't want money, food, etc. We'd even take an insurance program that cost us a couple of hundred dollars a month, but no one will touch Cass. We can't find an insurance group that will cover him. I naively assumed that when something catastrophic happens there were these programs set up to help and give aid. You can never prepare enough for something catastrophic. Ryan and I prepared for a normal delivery and healthy child, but this is beyond our means financially. All the programs are income based, not disability based. We have even had the advice given twice that Cass would definitely qualify for programs if Ryan and I divorced. I'm appalled that it was even mentioned. Now we're collecting rejection letters to give us ammo. We're not feeling beaten, just exhausted.

11/7/04

2004-11-07T15:18:00.000-08:00

Sorry we haven't posted for a few days. The appoinment last Wednesday with the genetics specialist went well. We didn't really learn anything new, the doctors couldn't tell us anything definite because they don't know for sure. So we are just going to continue doing the course of action as we are and watch his development. They were pleased to see how much better he looks compared to how he looked in the hospital.
We're changing his meds a little, trying to figure out what mixture of meds will work best for him and keep him stable without pain. Nutritionally he's been given a microlipid to help him gain weight. He's also been given a new antibiotic which has been upsetting his stomach and causing pain. His doctor said that he'll probably be off and on with antibiotics which worries me.
We're setting a pattern of doctor visits almost daily or atleast 3 times a week. Hopefully things will settle in a little while.
Many of you have said you would like to post a message but you don't want to sign up. You can still post and not sign up. Thanks for your messages and love.

2004-11-02T11:22:00.000-08:00

Cass in his bath Monday

2004-11-02T11:18:00.000-08:00

Cass having a bath Monday.

2004-11-02T11:15:00.000-08:00

Cass after his bath on Monday. He loves his bath time and enjoys getting everyone wet!

2004-10-31T07:02:00.000-08:00

Big brother James as Captain Jack Sparrow and big sister Alexis as Dorothy. Our church has an annual Trunk or Treat in the parking lot of our building. It was Saturday night and they had so much fun.

2004-10-30T14:53:00.000-07:00

Cass 10/30/04

10/28/04

2004-10-29T17:13:00.000-07:00

This week was up and down for Cass. He started breathing really shallow on Monday, like he was panting and taking about 100-105 breaths a minute. His heart rate was up about 180-190 and his SATS dropped into the 80's. Tuesday we went and saw his pediatrician and she sent us over to the radiologist to get a chest xray. It came out negative so we thought we would take him to his pulomonologist the next day, but that night the nurse from the pulmonology clinic called and said that his pulmonologist wanted us to take Cass to the ER. So we spent the evening at the ER where they took cultures of his trach and nose for RSV and pneumonia.They wanted to keep him over night to watch him but we have nurses and I didn't really want to lose the great nurses we have, and they really could do the same job watching him at home then at the hospital. They watch him even closer than if he were in the hospital. Wednesday his heart rate was high again this time up to 200-205 and his SATS dropped to 72%, with shallow breathing and no matter how much oxygen we gave him the SATS wouldn't go up. His whole body was bright red but he didn't have a temp. He was diurphretic and clamy. It was pretty scary because he was in pain and we couldn't do anything to help him. Thursday we spent all day at the doctors from 10 am to 4:30 pm. We first saw the GI doctor and they noticed granulation around the stoma of his feeding tube so they carterized it. That was painful for him. We saw the dietician next and adjusted his feeds and added an oil to his milk. Then we saw the pulmonologist where he set up a plan for us to follow if his heart rate should race like it did again. Hopefully it won't happen again. Cass has had a rough week and hopefully it'll calm down a bit here for him. He is up to 9lbs. 13 oz. today, gaining a good amount this week, but still considerably below the weight where he should be. Today he slept for most of the day, so I guess it has been a good day for him. I'll write more as we go along. Wednesday is the big day we talk to the genetics doctor, and I can hardly wait!!

10/23/04 "Trips to the Doctor"

2004-10-23T10:11:00.002-07:00

Thursday and Friday doctors appointments went really well. On Thursday his pulmonologist was pleased with how his trach site looked. He was a little worried about his breathing so he gave him a stronger dose inhalation solution called DuoNeb to helped open his bronchioles. Everything else looked great to him and we'll see him in another 3 months or sooner if needed.
We also met with the dietician on Thursday and she wants us to increase his intake from 37ml hour to 40ml hour. She also increased his diet from a 24 cal diet to a 27 cal diet. He needs to fatten up. We're going to leave him hooked up to the feeding tube 24hrs and take him off only when needed. We'll meet with the dietician again next Thursday to see how the weight gain and feeds are going.
Friday's appointment with his pediatrician went really well too. He gained weight so he's up to 9lbs 4 oz. Little by little he is gaining. She was pleased to see how well he looked. It's amazing how much 2 oz can affect a baby. We'll go see her again in 2 weeks.
Thursday during Cass' bath he started to react more in the water. He loves his bath time and has started splashing and kicking the water. He is so happy in the water. While I was washing him he hit another mile stone. I was holding him up to see if he would put weight on his legs yet and he did. He hasn't at all up until this point. His doctor was happy with this mile stone. It's a sign that he is getting stronger. I know it doesn't seem that big of a deal, and with my other two children at this age I wouldn't have thought about it really, but for Cass this is a big deal since his muscle tone is so weak. I'm excited about it.
We're continuing this week with 19 hour a day nursing care. I don't think I can handle any less. Our insurance told us that the coverage for it will run out soon. Ryan and I are waiting for them to drop us. We're trying to seek out all our options. We looked into purchasing a secondary coverage plan but it won't kick in until 2006 and it's not cheap. If anyone has any advice, suggestions, experience with this kind of thing it would be greatly appreciated if you could share with us what you know.
The nurses that are helping to care for Cass have been great. I think they're all smitten with him. They have all meshed well with our family. We feel greatly blessed for the ladies that have come into our home to help. They are a great group of skilled nurses and they are taking care of us.
We're so thankful for the members in our church for all they do for us. For their strength, service, prayers, and love. I'm so thankful for those who have stopped by to express their love for us and those who have taken my children for a few hours. I'm thankful for all of our friends and family who live else where and send their love and prayers our way. And I am thankful for those who have happened to cross over this webpage without ever knowing us before and who have the love in their hearts to share the sorrow and happiness in our lives and to pray for someone you haven't met. I have a testimony of prayer and I know that our Father in Heaven listens to our prayers. We miss all of our friends and family who can't be here and know that your thoughts are with us. Thank you all, again!

10/21/04

2004-10-21T16:09:00.000-07:00

I'm sorry that I didn't clarify what exactly Cass' syndrome is. It's called 4q Deletion Syndrome. His specific one is 4q34.2. We're not sure exactly what problems he'll have or what will happen. We're trying to deal with it day by day and be thankful we are together. Thank you all for your added support. It is very comforting to know others are reaching out to us.

10/19/04

2004-10-19T16:56:00.000-07:00

We finally got a scale from the hospital. We had the hardest time trying to locate one that we could rent, but the hospital called yesterday and said they had one for us to borrow. He's still at the same weight as last week. We have his first appointment at the pulmonologist on Thursday and also with the nutritionist.
His SATS have been dropping into the 60% but then will bounce back up with help of oxygen. It seems he has to have more and more oxygen lately, or maybe it has always been this way I'm just noticing it more.
It's hard for me to think that he has any mental disability because he is so alert and interactive with others. Last night we were eating dinner and put him in the bouncing seat on top of the table. He watched everyone so intently and enjoyed being a part of dinner. Ryan and James were play fighting with swords and laughing and Cass was getting a kick out of the two of them. He looked as if he couldn't wait until he was big enough to play with them. He has this toy that when he kicks it it plays music, lights up, and parts of it spins. He loves it and is entertained for a while. It just seems that he is okay. He kicks the toy to make it spin over and over and reaches for the rings, he puts his hands together, he sucks on his thumb and grabs his ear while he sucks on his thumb, he seems to be doing normal things that he should be doing. We'll see, I guess, what his disabilities are when we meet with the genetics specialist.
We're still dealing with ways how to pay for the help he needs. I know eventually the insurance wants to cut out the home nursing care, hopefully it won't be anytime soon.
Things are getting back to some-what normal. We carved pumpkins with Lexi and James on Saturday and they really enjoyed that. They're getting excited for Halloween to come. James wants to be Captain Jack Sparrow from Pirates of the Caribbean and Lexi wants to be Dorothy from the Wizard of Oz. They love to dress up, but even more they love to eat candy. They helped me decorate the front door and loved it.
I better go feed the kids. I'll write more later. --:)

10/16/04

2004-10-16T08:46:00.000-07:00

This past week we've been busy with trying to get all the equipment we need. Cass is adjusting well to being home and so are the rest of us. He sleeps pretty well and seems to sleep through being suctioned most of the time. He gets upset easily though when he's moved around too much. He loves to be held and falls to sleep easily in your arms. His temperature regulator in his brain doesn't seem to function well because one minute he's sweating profusely and then the next minute he's cold. His temp is all over.
Yesterday was his first check up at his pediatrician since his homecoming last week. He lost 1/2 an ounce this week which is surprising since he's on 21 hour feeds. So, his feeds were increased from 35 ml hour to 37 ml hour and calorie intake increased. He seems to be tolerating it well. He still vomits at least once a day and it usually occurs around 7 am. We decided to elevate his head even more to a 45 degree angle. Maybe it'll help the acid drain better out of the G tube.
We also heard back from the Genetics Specialist from Children's Hospital in Seattle. The initial chromosome test said that everything was normal, but something just didn't sit right with her so she ordered a retest. It turns out he has all 46 chromosome XY. Normally we all have 2 of each chromosome 1-22. Cass has all that, but further exploration of his chromosome showed that his #4 chromosome was where the problem was. One chain of his 4th chromosome was normal, but the other had a band missing. It's called deletion 4q34.2 or qter and it occurs during embryonic development for no apparent reason. Some symptoms are mental retardation, unusual facial and cranial malformations, heart defects as well as limb deformities. How severe his symptoms are, we're not sure but the doctor believes he may have a milder case. The problem is that there isn't a whole lot of literature on this topic because it is rare. We don't really have an exact guide to what to expect because there isn't any literature on his exact case. We'll meet with the genetics specialist in the beginning of November and we'll have more information by then, hopefully. He just seems to be so alert it's hard to believe that he may have some mental development issues. If anyone knows anything about this topic it would be greatly appreciated. All I have is what I've read on the internet. It's good to have a reason to why he's having so many problems so we can work with it. For the most part we are in good spirits and are prayerful that all will work out for the best. It's in the Lord's hands and we trust fully in Him. Thank you for all of your continued prayers and thoughts. We are truly blessed!

10/13/04

2004-10-13T10:16:00.000-07:00

It has been so great to have Cass home, and a little overwhelming. I'm thankful we have nursing care. I can't imagine what it would be like not to have the help. Last night we couldn't find a nurse to cover so I had to stay up and care for him until about 5 this morning. I don't want to do that again. I have a migraine and I can't sleep during the day because of the other two.
Cass is doing good. I think he is happy to be home. His SATS drop still and he still needs oxygen and a few fevers. For the most part he seems more relaxed at home. His brother and sister are sure happy he's home. They check on him every morning when they wake up and throughout the day. It's a lot easier to have him home instead of having to go down to the hospital daily. I love being able to come and check on him in the middle of the night.
We're adjusting and trying to figure out a schedule that will work for all of us. The older two have been wonderful for a 2 and 5 year old. They have been great kids and very helpful.
Monday Cass had a doctors appointment and weighed in at 9lbs. 2.5oz. Not a whole lot but at least he is not losing. He also had 5 shots to catch him up on his immunization. Poor little guy! It was so sad not to hear his cry but see his face in pain. We'll go back on Friday to be weighed again and if he hasn't gained then we'll increase his intake.
I'll write on Friday to let you all know how his appointment went. Thank you for all your thoughts and prayers. We feel greatly blessed.

10/09/04 "Glorious Day!"

2004-10-09T16:55:00.000-07:00

He is HOME!!! We are so happy to have our little baby home. We just got done with all the orientation for the machinery he has to be on. Talk about overwhelming!!! I'm thankful we have a nurse right now to help us adjust. I don't think we'll be going to a whole of place for awhile. He has so much equipment we have to drag around everywhere we go. He's home now and will get stronger quicker. Thank you for your prayers and thoughts. We'll keep you posted!

10/08/04 "FINALLY!!!"

2004-10-08T18:03:00.000-07:00

Tomorrow is the day we bring Cass home. Everyone is ready, but nobody is more ready than I. Nurses are ready, doctors are ready, insurance ready, we're ready! He's doing great and I think he's ready too! Don't get me wrong, the hospital staff has been great. We couldn't ask for greater love and care for him, but it's been 6 1/2 weeks since he first went into the hospital. Most of his life he has spent in the hospital. I am so anxious and excited and so are everyone else in the house. I know it's not going to be easy but I know we can do it, and he'll get stronger more quickly if he's at home. He's far from being healed, but he is at least on the road to recovery and hopefully in a few years he'll be running around the yard following his big brother and sister healthy. We'll keep you posted!!

10/7/04 "The Ball Is Rolling!"

2004-10-07T16:46:00.000-07:00

It's in the works for Cass to come home by this weekend. Wouldn't that be great!! His room is all ready, the nurses are set, and the doctors are agreeing that he needs to be home, especially before the hospital gets filled with too many sick kids. Right now he is on isolation to prevent him from getting sick. There's a limited amount of staff who work with him and they all have to wear the gowns and masks before they enter his room. Hopefully we can keep him healthy so he can come home. He is still on a few meds which he'll probably still take when he is home. He had an EEG yesterday and the cardiologist was pleased with it. They took him off Lasics which protects his heart against infection; they really didn't want him to go home on it. Everything is starting to roll for him to be released. We are so excited, and I think it's really going to happen this time! We all got our flu shots to protect him and he'll start his RSV shots in two weeks or so. I pray that he will stay healthy so he doesn't have to go back to the hospital, but that's getting ahead of myself. Thank you all for your continued support and prayers. We will keep you posted.

10/5/04 "Hopefully Will Happen"

2004-10-05T10:00:00.000-07:00

We received a phone call this morning that the insurance will cover home nursing care through the rest of the year. Then hopefully my husband's work can have it put in the policy come the first of the year. So Cass may be coming home this week! We're more than ready to have him home. I'll write more later as the plans solidify.

10/4/04 "Monday Morning Latest"

2004-10-04T11:33:00.000-07:00

This morning we found out that the doctor is sending Cass down to the 6th floor from the 7th where the PICU is. This is a very good thing. It's not home, but it's out of the PICU. We'll have a more private room for him so we can be there and not bother anyone else. It's a step closer to home.
Cass, as usual, is in a happy mood today. He smiles at everyone and doesn't want to miss on anything. He even smiles when they draw blood from him. He is such a good baby, with the best disposition. He adds so much to our family and we're so happy to have him in our family.
I'll post more later as we learn more of what's going to happen. Thanks!

10/2/04 "A Little Outing"

2004-10-02T21:16:00.000-07:00

Since the weather has been so beautiful and unusually warm for this time of year we took Cass on a little walk outside around the hospital grounds. He and his big brother, James (2 1/2), sat in a wagon while Cass' dad pulled and I trailed with the IV pole behind. He enjoyed it and it wiped him out for the rest of the evening. We were able to take some pictures. Cass' big sis, Alexis (5), was at school and was unable to join the fun. Today we all went to visit him and spent a good while there. Lexi was able to sing to him and decorate his room with more of her drawings. They miss him too. A least the hospital is close enough so we can all spend as much time together as possible. The staff there has made it so much easier to leave Cass when it's time for me to go home. They are his family away from home and have been so loving towards all of my family. It makes it less stressful on all of us and makes for a pleasant trip when the whole family visits.
He has gained weight, weighing in at 9lbs and 3.5oz. Last Saturday he weighed in at just 9lbs. He is slowly but surely progressing in weight, but we still have a long ways to go. Before any more surgeries, he needs to be healthy and atleast 10lbs. He is on a 21 hour feed and 3 hours off through his feeding tube so he is pretty much eating constantly, except for those 3 hours. He's also on a higher calorie diet to hopefully boost his gain alittle. Since his tracheostomy and the GJ Feeding Tube he is more awake and interacts a lot more. It's amazing what breathing and eating can do for ya!
We're still trying to figure out the whole home nursing situation and insurance thing. Nothing new has changed with it. We're hoping something or someone will budge so he can come home this week with home nursing. His health has been great, he is stable and no new fevers or infections, knock on wood. So I guess we'll just wait...

9/30/04 "Spoke Too Soon!"

2004-09-30T18:28:00.000-07:00

Well...Cass won't be released tomorrow. Infact, we're not sure when now. The whole issue of insurance and home nursing care is not working out yet. We got our hopes up too soon. Please keep praying he'll be home soon, please! Thank you!!

9/30/04 "Fingers Crossed"

2004-09-30T08:34:00.000-07:00

I hope I'm not speaking too soon, but we're trying to get Cass home tomorrow. Hopefully all will go well; insurance, medical supplies, and staffing the home nursing care along with no complications with his health. I will be able to have all my family under one roof once again. Cass has been doing well this week, having a few nights of fever, but it hasn't happened for two nights now. He will get better at home more quickly, and we can get back to some sort of normalcy or what it will be from this time on. I'm a little worried about caring for him at home because he is needing so much attention and care still. During the day it'll be fine, I'll be home but at night he still needs someone to be up all night to suction and care for him. We'll have a nurse for 24 hours for a little bit but I'm not sure how long it'll last. Ryan nor I can stay up for 24 hours seven days a week to care for him. We're hoping we'll be able to get home nursing care for longer. Hopefully as long as we may need it.
Thank you for your continued prayers and thoughtful words of encouragement. For those who know us, we're very private people and try not to burden others with our dealings, but this has been nice to hear so many sending their love to us via message board. It has helped us as a family know that we are loved and that their are so many good people. Thank you for letting us reach out and draw upon your strength too. I know Heavenly Father gave us the ability to feel joy and pain so that we may know what others are feeling and help each other through trials. We are so thankful for you all.

9-26-04

2004-09-26T19:53:00.000-07:00

I've been pondering a lot upon this past month how drastically my family's lives have changed. It has been a very trying time for our family, and will probably continue to be so, but I think the worse is over, meaning the unknown. My two oldest who are still babies themselves, are trying to adjust and are doing quite well for children who are used to having their mom home everyday with them to seeing her only when they wake up and go to bed. I haven't shared how we're doing and have tried to use this post just for an update on Cass, but since we are a family and believe that we are a family forever, this affects our whole family. We're all being tried of our faith, and hopefully we will only grow stronger. I'm learning my limits, or maybe my limits are being stretched, but I know we won't be tried more than we can handle. I pray that we can remain faithful, hopeful and prayerful throughout this time and that we will come out stronger in the end. I know that God lives and He loves us and knows each and everyone of us. He knows our burdens, He knows our trials, He knows our weaknesses and He has sent His Son to guide us back to Him that we may all live together again someday.

9/23/04 "GOOD DAYS AHEAD"

2004-09-23T07:54:00.000-07:00

Sorry we haven't updated since last week. Cass is doing well. Like I said before, he is a fighter. He's slowly being taken off the medication that temporarily paralyzes him, but he is still on some pain meds. He is awake and tries to take the ventilator off. Monday morning was the first time he was awake in a week and when he heard my voice, he started kicking and smiling. It lifted my spirit to see that he knew who I was. I still haven't held him, but I'm just happy that he is awake. Yesterday he had surgery to have a feeding port put into his stomach. The opening sits on the outside of his stomach, goes through his stomach to his small intestine so the food bypasses his stomach directly. This will help, hopefully, on discouraging the reflux and the aspiration. He looks to be slowly gaining weight, so this week has been a good week. I feel comfort from our Father in Heaven knowing he is with us and has not forgotten us. He loves us and is blessing us with this sweet baby, and the trials we go through will only make us stronger. Thank you for helping us get stronger, and our baby.
Love,
Cass' mom:)

9/15/04

2004-09-15T19:32:00.000-07:00

Sorry we haven't typed lately, but there hasn't been any change. He is heavily sedated so he won't move while the trach heals for seven days. For now we are waiting and praying that this time will pass quickly.
Cass' older brother and sister don't understand what's happening, naturally, because of their age, but know that their baby brother isn't 'feeling well'. This week we've been trying to spend more time with the older two since Cass is basically in a drug induced coma. Monday they will slowly take him out of being sedated and try to let him breathe on his own, then we'll see when the other surgeries will take place. So please continue to pray for our little trooper.
We feel so very blessed to be where we are. The care at the hospital has been superb and we are thankful for Heavenly Father's guidance since Cass has been born. We're so very thankful for family and friends, newly made and from before. Thank you for your support and love. We know you all are waiting as anxiously as we, and keeping a prayer in your hearts for him. We love you all!
--Cass' mom

9/13/04

2004-09-13T13:29:00.000-07:00

Cass went into surgery about 10 am today and we waited with full hearts in the surgical waiting room. After about 2 1/2 hours all they could get done on him was the trech because they had a difficult time intibating him. The other two surgeries will have to wait for now, but atleast he will have an open air way. They are finishing up the operation as we speak. What an emotional day, but we feel comfort in knowing that it is all in the hands of our Heavenly Father. Will write more later--Cassmom :) (12:30 p.m.)

Night before surgery

2004-09-12T22:15:00.000-07:00

Today was a very surreal day. We're just waiting for the surgery tomorrow and the more I think about it, the more stressed I get. Cass had an echocardiogram done and it looks like his VSD has closed (the hole between the ventricles) which is good news. The other three problems; ASD, PDA and the Pulmonary Valve are not budging. Hopefully they will resolve themselves too.
Keep us in your hearts and prayers, tomorrow especially. I'll write as soon as we learn more. Thank you again for the words of love and encouragement.
Love,
Cass'mom :)

9-10-04

2004-09-10T21:29:00.000-07:00

I just wanted to inform everyone that the surgery is rescheduled for Monday morning. We thank you all for your words of love and encouragement. Even though we have not met many of you who have posted your compassion, we feel we have friends from all over the world who are feeling through this trial with us. We are so overwhelmed with the out pore of love people have showed us. Thank you, thank you, thank you. I don't how we would be able to deal with so much without friends and family. Heavenly Father is sure taking care of us.
We'll keep you all posted. Thank you! :)

2004-09-09T20:11:00.000-07:00

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9-9-04

2004-09-09T13:22:00.000-07:00

It looks like the tracheotomy scheduled for Friday will be put off until 9-13 or 9-14 so that the right amount of time and doctors are in place to do the tracheotomy, fix the hernia and put the port into the stomach for direct feeding to bypass the problem area and help reduce reflux and aspiration episodes.

The latest on our sweet baby Cass

2004-09-08T18:01:00.000-07:00

Our baby Cass came to us on Wednesday July 14th, 2004. He was born with some heart issues, namely; ASD,VDS, PDA, a Pulmonary Valve that doesn't function well and a few other things with his heart that are all known to be a heart murmur. He also was born with some genetic defects that have resulted in his difficulty to breath on his own, eat on his own and his pinky fingers aren't fully developed. He has been in the hospital since the 25th of August with some difficulty breathing and keeping his food down. Since then has been through a grueling regimen of tests and a feeding tube since. To say the least, he has been a trooper. On Labor Day the doctors determined that his breathing troubles were the result of a sever case of Laryngomalacia. It's good to now know what is going on and be able to move forward with treatment. The doctors say that most kids grow out of this condition on their own in a year to a year and a half. More info is readily available on the internet. We just need to get Cass to a stable condition that we can maintain at home in a normal setting until he is able to out grow his condition.

Last Friday night he was taken to the PICU due to being in distress. His blood oxygen levels have been stable since they've kept him on a CPAP machine. The latest is that on Friday (9-10) Cass will have a tracheotomy done to help keep his airway open and bypass the troubled area until it can heal on it's own.

He is a sweet baby, a blessing to our family and we are so thankful to our Heavenly Father for the many prayers and blessings he has sent our way. We thank you all for your love!
Love,
Cass' Mom :)