Good day today, really good day.

I have had a hard week.
As you read my posts, you might have noticed that in debating with health insurance, loving a very sick little 5 year old and absolutely adoring a wonderful 8 year old with autism has made for an overwhelming week.

As I was walking into the hospital I started to have what I think is a panic attack. I couldn't breath, my chest felt like someone was sitting on it, and I felt those huge sobs in my throat. I took some deep breaths and walked into the lobby. As we made our way down to where we needed to check in for pediatric specialty I knew that I was going to explode any minute.

I felt like I just needed someone to understand what I was going through. I called my darling cousin Ruth who's daughter Davy has a lot of similar issues as Cole. She answered her phone and I started sobbing. Through my tears I told her where I was and what I was doing and that it was all so foreign and new and I did not have any routines in place. She was so cute and said exactly what I needed to hear. "Charise, this will all be your normal in a few months. This will be your place where you feel safe and taken care of." It was exactly what I told her a year and a half ago when she was starting with Davy Jean. We talked about the struggles of parenting a child with such amazing and specific needs, and then I was ok again. It's funny how just the love and understanding of a friend can totally get you through what needs to be done.

From there on our experience was amazing. The check in lady went out of her way to explain the procedures to us. She printed out some paperwork for the insurance that she did not need to, but it will make my life so much easier. (Proof of his insurance and that it is active in case anyone gives me grief over it, which always happens.)

The doctor, Ashley Sutton was fantastic! She sat down and went through all of Cole's needs, medications, refills, feeding supplies, formula's, and anything else she could think of. We were there for 3 and a half hours! Their team community care director sat with me for a long time helping me coordinate all of Cole's future needs. (i.e. GI specialist, Pulminoligist, ENT, Speech, Feeding Therapy, Nutritionist, Psychologist, etc.)

I left the hospital happier than I have been in months! The relief was so great! I called Bill and told him the ONLY thing that could have made it better was if they would have been handing out free starbucks hot cocoa's in the lobby. :) (For those who don't know, when I have a big day of doctor's appointments with Cole, my reward for being a happy mommy is to stop and get a Starbucks for me and a treat for Cole.) Then I told him that I had to stop at Target on my way home to get a few things for Kids Are Music the next day. So I walk into Target, and your not gonna believe this... They had a STARBUCKS in Target with a small sign that said, "Question of the day... Answer this and get a FREE HOT CHOCOLATE!!!! Which president made Thanksgiving into a National Holiday in 1863."

Duh!!!! Abraham Lincoln! I literally burst into song at Target.

Best Day in a really long time! Welcome to Chari-Land!!!
This picture is from the summer when Cole and I were coming home from his pre -op for his most recent vocal chord surgery.

ps. Cole is doing well. Still home from school, but up and about. All in all, feeling good.
pps. Lani, thanks so much for watching savvy today for me. It really helped not to have her home with Cole while he was miserable. Mitzi, thanks for inviting Billy, Bright and Savvy over to the park. I am so glad Brighton got to have some fun with your kids. I love you both and living by you is amazing!

Cole, my rock star!

We are home from the hospital and we are thrilled!
#1... Cole has HEALTH INSURANCE!!! As of 5:00pm Cole had a Medicaid number. Within 10 minutes we were in the car driving to the ER. I had packed a bag in the middle of the night Friday night when he was so sick and barely breathing. I usually just keep a bag ready.

#2... The doctors and staff were great. We were really pleased with the service. I realize that we were VERY SPOILED with CHOC in Orange County because it was such a new hospital and so clean and nice. UNC Hospital is very highly ranked for pediatric pulminary (continually listed in the top 10 in the United States for that specialty, and that is what we were looking for.)

#3... They gave me the choice of staying overnight or coming home to sleep and returning for an appointment tomorrow. I love my bed and house, so we jumped at the choice to come home to sleep and then follow up tomorrow with them.

#4... Our appointment tomorrow should get us set up with GI and Pulmonary specialists. YAHOOOOEEEE!
We are feeling very blessed tonight.

#5... Once again, the answer to what is wrong with my little boy... "Mam, he was born at 24 and a half weeks. He has CHRONIC LUNG DISEASE. It is amazing that you have not been here every month.
Apparently having chronic lung disease is what is the matter with him. I guess it is a big deal. It does get us front of the line passes at Disneyland and handicapped parking at the mall during busy season...

Thank you all for your support, love and prayers.

Now if only the rest of us could get health insurance coverage. hmmmm, keep up the prayers.
Love you,
Charise

Dear dad,

Horrible day today. Horrible. That kind of day that has you heaving sobs where you are not sure if you are going to really be ok. That kind of day where you think that maybe you don't have enough faith to figure it out. Where you think, "how can I possibly be ok enough to feed my babies and get them to bed without them seeing my sobbing."

Low lights... where words just do not do it justice.
...Conversation with Social Services.
When I explained that in 7 days (yes, on Thanksgiving day exactly) my 5 year old will be out of formula, medicines and medical supplies, and I NEED TO SEE A DOCTOR IMMEDIATELY for him and their response is, "As we have told you before, the Emergency Room can not legally turn you away." (Of course when I asked, we would be expected to cover any and all expenses due to that visit.)

...Finding out that my awesome autistic son who has been so excited for football to start, got lost after I dropped him off at the practice. He went to the bathroom first, (so much more to that part of the story, but too heartbreaking to write.) and then when he came out, he couldn't find the football class, so he sat at the bottom of the stairs all alone for an hour and 15 minutes waiting for someone to come find him. When I asked him his best thing tonight after putting him to bed, he started sobbing and telling me how worried and sad he was about missing football. He told me how disappointed he was not to be able to find it and knowing that it was going on and that he just did not know what to do. He sat there and waited for help, and I was not there to give it to him, because I was on the phone with Social Services. Do you know what it is like to hold a sobbing, heartbroken child? It is one of the worst feelings in the world!

(Dad, this is where I am incoherent rambling on the phone right now and you can't understand me because I am crying to hard for my words to make sense. See??? Isn't this blogging thing better than telephone anyways!)

Dad, I am so not okay.

But I love being a mom. My Brighton, Cole and Savannah are the greatest blessing and joy in my life.

Lani, I won't be working out tomorrow morning. Cole has to have new glasses before he can return to school tomorrow, and that did not happen before the doctor's office closed tonight.

And Timmy spilt a glass of milk.

Cole is a rock star!!

Cole's last big surgery on his California tour was today! It went great!! He is all done with all things medical in the state of California!!! (knock wood, barring an unforeseen craziness!) We have finished up with ENT, Pulmonary, GI, Optometry, Speech/Language, OT, Neurology, and general pediatrician. We are done baby!!!

Whooo hooo!
Sorry, no pictures from the hospital this week. I was full time mommy snuggle duty. He panics now more than ever. i think it is because he knows what is coming.
A couple of funny crazy Cole stories for you all to enjoy.

Yesterday, part of the pro-op was to get blood work done. Not a favorite of Cole's. After all the hoopla, tears and distress of the day, as we were driving home, he says to me in a panicked voice, "Mom! We forgot my blood!" "What?" I ask. "We forgot to get my blood at the hospital." "Cole-ee, we leave your blood there. We don't take it home with us." Now aghast, horrified and VERY WORRIED he says, "Mom, they are going to DRINK MY BLOOD?????" What, I ask again, because thise conversation is too crazy for me to comprehend, and as most of you know, with a paralyzed vocal chord, Cole can be difficult to understand. So he now is in sheer terror panic, "Mom, they are going to DRINK MY BLOOD?????" I start laughing, (which seriously ticks him off, but it had been a LONGGGGG day of appointments and tears, and I was done) and I say, "No, nobody is going to drink your blood!" He is quiet and I think all is well, until about 6 seconds later when in the silence I hear, dead serious, "They are going to EAT??? my blood? Are they going to cook it like marinara sauce."

So by this time I am laughing so hard and he is ticked because he is serious, and freaking out that the doctors are having his blood over pasta for dinner tonight. I tried to explain testing his blood for sickness, but since I was laughing I could tell he was not buying a word I said. So much for Cole wanting to be a doctor someday. Not if they have to eat the blood for dinner.

Thanks to all the emails, calls and facebook notes today from you all. We felt very loved and blessed.

Hip! Hip! Hooray!!!

After waiting since JANUARY we finally have Cole's newest surgery date!!! This is HUGE NEWS! We were promised in January that he would have the surgery over and done with by mid-spring... Well, CCS, Medi-Cal, authorizations, etc... some of you know what I am saying. Our surgery date is set for Tuesday, August 2, early in the morning. This is a repeat of a surgery he has had three times before. In basic terms, the dr. will shoot his left vocal chord with a botox type substance, and this will make it easier for Cole to swallow without aspirating into his lungs, easier for him to breathe, and easier for him to talk. It will last approximately 4-6 months. Then we will wait to be scheduled for the same surgery again. He will do a post op two weeks later, and be ready to move to North Carolina by Saturday, August 20th! Yahooooo!

Savvy's Newest Trick "the Sequel"

So a few weeks ago I posted about Savvy's LOVE of climbing everything!!!

Well, she climbed up the front of her dresser, (see picture below, this time she climbed the pink, white, black square cubes) and fell off of it while holding the picture of she and I (far left) and it shattered in her hand.

We could see that it was really deep, so we took her to the ER. She got stitches and ever since then, anytime anyone she does not know gets too close to her, she gives them the meanest stink eye!



A week later I took her to get the stitches out, and the doctor said it was still really bad, and that we needed to wait another week. So the next week, at the 2 week mark, I was going to take her in. When we put her down for her nap, she had her stitches in... when we got her up from her nap, they were GONE! ICCCKKKKKKK!!!! So apparently she gnawed them off, but seriously NASTY! I can't find them... so did she eat them? (By the way, this girl eats anything in sight!)

Savvy Dancing

I wish I would have journaled more throughout the scary medical times of Cole's life. As I was living it, I think it was so depressing and frightening, that I never wanted to write about it, and now that seems sad. He is such a miracle to us, that we know we are very lucky.

Well, Savvy has "funky" walking problems. We are seeing a specialist this Thursday to determine what needs to be done. But here are some fun video's to help me remember how darling she is when she walks right now.






I KNOW!!!! How great is she? I am so crazy in love with my baby girl.

Savannah Walking

I wanted to show my mom and dad Savvy's cute walk. She kind of waddles from side to side... We are seeing a Pediatric Orthopedic Specialist next Thursday to find out what we need to do. Her hip joints are not correctly aligned and her tibia's (bone from the ankle to the knee???) are both very curved... not straight.

Mom and dad... make sure to watch the very end. We love you!!!

Brothers

Brighton is a terrific kid. He is fun, creative and smart.

But most of all, he is genuinely sweet. He is incredibly caring. Yesterday, Cole was really sick. He was coughing that horrible cough that hurts just to hear it. He couldn't breath and he had tears streaming down his cheeks. Brighton came in and gently kissed him, then knelt down at the side of my bed and looked up at my with these beautiful eyes full of sorrow and tears. I asked him if he was saying a prayer and he nodded his head so solemnly. He proceeded to say the most beautiful prayer pleading with the Lord to please heal his baby brother, and take his pain away.

The spirit in our home with these children is amazing. We are so blessed to have them in our lives.

And for documentations sake... Cole last severe breathing illness episode was July 1. Then November 26. We had not been out and about at all! We totally relaxed on Thursday, but Friday it hit him hard. On thursday morning, I mentioned to Bill that I thought Cole was not feeling well. He was warm, and slow. His eyes seemed puffy, and he was not his usual self. But he was not at all "sick".

Then this morning, after being MISERABLE all day yesterday... here he is at 9:00am.



Man I adore these kids!

Cole...Sick...Again

This is just for updating and keeping track purposes only.

Cole woke up at about 5am this morning with the horrible breathing problems again.

Yesterday he did not leave the house. He stayed home all day.

We did have two darling, healthy friends over to play. They have a semi-sick baby brother who was going to come but didn't, because this friend knows how fragile Cole is. (She is an amazing friend, and I am lucky to have her, and her kids in my life. Her husband is okay... but needs to learn the joys of coconut before he can be considered great.)

Friend, you know who you are, stop reading this now because it is in no way your fault and I know you will blame yourself!

Anyway... is it possible that they were fine, but just carried the germs over to Cole? Or am I way over-thinking this? But really, what else could it be? No new soap, no new cleaning supplies, no changes of any sort. No weather changes, no smokers in his area, no hay, no grass.... ARGHHH!
It is making me crazy just not knowing what causes it.

This video is AFTER his breathing treatment. I really don't think the treatments work... but what do I know? This was definitely not as bad as some are... But I want to keep of record of them. Notice the tears in his eyes at the end. I know it is terribly painful for him to cough like that for hours.


He slept very fitfully until 11:00am. I had to stay close because when he stirs and starts to wake up, he realizes he can't breathe and panics and it makes it so much worse. So I just snuggled him in bed until 2:00 today. (Rough Life, I Know!)

But now tonight, he is much better.

Really sick little guy

Cole is having a breathing "attack" that started Sunday night and I want to journal it so that we can remember it later. It has been almost a full week and he is still really bad.

This was our first time that it happened on anything other than a Saturday night/Sunday morning. At about 1am on Sunday (really Monday June 1) morning, Cole was really struggling to breath. This is him laying in bed. You can't really see him, but you can hear him. It is really a struggle to get air in and out, and there are lots of coughing attacks along with it.




We take him in to sleep with us whenever this happens. I have two dear friends, both strong, healthy 30ish year olds, who passed away this past year in the night because of breathing issues just like this. It literally terrifies me. These two friends (Kelly Knight and Zachary Cox) were healthy, active, grown men, but their asthma actually killed them. I am not ready for my Cole to go so soon. He is our joy and light in our lives.

Here he is in Daddy's arms. This is after the breathing treatments.
We take him outside to breath the night air, and it seems to help, although very little.

He stayed home from school Monday, and I held him all day in bed. He was so weak that he couldn't even talk to me. He just whimpers and points.

Tuesday he begged to go to school, and he seemed a little better so we sent him to school Tuesday and Wednesday. Thursday he was miserable again, with fevers, so I kept him home. Today, Friday, he seems to not be any better. I talked to his pulminologist and they say I should take him in to the Emergency Room tomorrow morning if he is not better. I always hate that because they love to admit him at the hospitals... and then we end up spending the week... or month. :)

He sweats when he sleeps and wakes up in the mornings and from naps drenched. I have to change him and his sheets. Sometimes I even have to lay his pillow out to dry.

He gets fevers on and off. It seems to be helped by the baby tylonal.

We are giving him Prednisolone 15mg/5, 4ml 2 x a day. I started this yesterday.

He also does breathing treatments for about half an hour, every four hours. Albuterol and Pulmacourt. I am so lucky to have a nebulizer at home! This is the same machine they use at the hospital, and it makes it so much easier not to have to go to the hospital as often when we can just do it at home.

I don't mean to sound dramatic, but sometimes I feel like I could just start bawling. It gets hard to "hold it together" when your baby is sick. My heart aches for those moms of children who are really sick. It makes me realize how amazingly lucky we are that Cole is so healthy and strong. I think Heavenly Father just knows that I couldn't deal with it being too hard. I remember when we had only had Cole about 3 months, so he was about 7 1/2 months old. He was really sick, and had his full time oxygen, heart monitors, and wouldn't eat anything... I remember sobbing in my office one day, and just begging Father in Heaven, "Please, I am not this strong! I can't handle this. I know you might think I can, but I can't!!" I thought about the promise given to us that we would not be tried or tested more than we could handle. That promise has really gotten me through some dark times. I always know that I can do it, and that I just need to hold on.

I know we will be fine. There are things I am really thankful for.
**Girl's Night Out where I can escape for a few hours and relax. (My Claim Jumper Artichoke and Calizone were sooo good!)
**Backyardingan's DVD... Thanks Auntie Sue!!!
**Doctors and Medications!
**Target's "amazing, why didn't someone think of this before" medication dispensing system. It has truly made me a Target fan for life!
See, the syringe goes into the top, and no mess! Then it goes directly into Cole's tummy tube. Amazing! And since I am doing 14 medications a day this week, this little device has been a huge help! Our Pharmacist at Target even gives me extra stoppers, sot hat we can put them in our Tylonal and other over the counter meds. So great!**Since he can't talk this week, he is signing everything. It is so precious when he comes in and taps my arm and holds his arms up to me and starts humming. It must not hurt to hum, because that is how he lets me know he is happy. He will hum for me.

**When I ask him how he is doing, he croaks, "not good". So sad, but also so cute!

This morning the school bus driver did not get the message that he was not able to go to school today, so she came by to pick him up. He wanted to go so badly, but keep in mind that he physically could not even say a word! So he stood on the front porch with tears streaming sown his cheeks, and made this little mewling noise, and opening and closed his hand. It was heart breaking! I told him that he could go next time, but he just kept crying the huge tears and mewling!

Overwhelmed...

Hi all. This is another journal entry post. Feel free to skip.

Sometimes it is just too hard. It can be so scary. I don't know how to do this. Why on Earth does Heavenly Father think I can handle this?

I just got Cole on the school bus, and as soon as I closed the front door I started sobbing. I feel so overwhelmed some times with Cole's issues. I have no idea how to be the best parent for him. If it is not one of his creams or ointments, it is one of his medications. If not one of those, then one of the breathing treatments. Six breathing treatments, Five ointment and cream applications, Eleven medications and ten bolus tube feedings each day. Sometimes it is easy, and it just works. Other days it seems time slips away and before I realize it, two hours have passed and I totally missed a medication, or an ointment, or even a tube feeding. And although I know that one missed thing won't be a big problem... I wonder how many small things missed will become a huge problem. I spent three hours last Friday at first the Target Pharmacy, and then the Wallgreens Pharmacy, bawling! I just kept telling the pharmacist, "I'm sorry... It is just me. I will be fine." But all week I had tried to get two Very Important medications refilled, and after a week, I was still not having any luck! It was because of mix ups with the insurance billing processes. The whole Joseph Rodriguez verses Cole Johnson... born in LA, has to see only LA doctors, can't transfer to OC... blah, blah, blah.... But the fact that my baby was miserable and sick, and no one seemed to care... it is just a horrible feeling!

I almost hate to write this, because my biggest fear is that my mom, or a sister or a friend might think this means I am not ready for another baby. That it is a good thing we didn't get the baby last month. But then I feel like it is my fault and I am not a good enough mother to the ones I have right now, and that maybe Heavenly Father doesn't think I am doing a good enough job. I just feel so overwhelmed this morning. It was a really hard night. And I don't do nearly as well without enough sleep.

I love my two amazing sons so much. I love being their mom, and never once have I wished that my life was anything different than what it is exactly right now. But I want another baby. I feel that having another child in our family is the right plan.

Sometime in the middle of the night Cole's button (the g-tube button in his tummy) got pulled out. We have no idea how, why or when. This is really serious. It is something that when it happens, we have to get it back in immediately. The first time it happened the emergency Room made us wait for two hours and they ended up having to bring us back the next day to surgically reinsert it. So now we know to demand that they see us immediately. But we also have an amazing, biggest blessing ever doctor named Robin Robinson that took the time to teach Bill and I how to re-insert it ourselves. When you get a g-tube, they tell you to rush tot he ER if it ever gets pulled ot. But now that we have learned how to do it ourselves, we have always been able to do it. It is serious that it is done immediately. The hole in the stomach immediately begins to close up and try to "heal"itself. It is really painful for Cole when we have to put it back in. Well, this morning Cole started crying and Bill woke up and went to check on him. He came back to me quickly and said, "Charise, his button is out." Those few words terrify us both. It is such a scary feeling to have an empty hole in your child... and know the problems that might go along with it. Hospitals and surgeries are way too common for this little boy. We do not want any extras!

Bill tried for a little while to get the button back in, but we had no idea how long it had been. Brighton and I said a prayer and daddy kept trying. We knew it was time to take him to the hospital, so well before anyone should ever be awake... I was on the phone to our dear doctor's home. Yes, I called her home and woke her up. (She has previously given me her numbers in case of emergency. Honestly... I couldn't have been called to be Cole's mom without her as a part of the package. She is like the Special Bonus Heavenly Father gave me to help take care of Cole.) After a few minutes of "coaching" us over the phone, we knew we were going to have to get to the hospital. (Thank you Robin! Sorry to wake you up so crazy early!)

I want to say right now that Heavenly Father does know when we can't do any more. He will not give us more than we can handle... because with the amount of fluid all over Cole's bed, we knew that the button had been out for hours. There is no way we should have been able to get it back in. But right as we decided that it was time to go to the hospital, Bill got the button to go back in. This does not just happen. It isn't something that should have happened. But our little family said a prayer together, and that prayer was answered very simply this morning. We are so blessed.

I am realizing right now that I think there was a Primary party yesterday afternoon that we totally missed. So if my darling Primary presidency ever happens to read this, please do not think that we just thought it was not worth the effort. I just totally FLAKED! I was out in front of my house all afternoon teaching Cole to ride a bike. (He still does not seem to get the peddling with his feet idea.) So I really, really was trying to be a good mom! I was not just sitting in front of the tv eating bon bons! But I just forgot about it. Yes, it is in my planner. Yes, I looked at my planner that morning. It just totally left my mind!

Seriously... how do you all do it?

Carrie Collins... I have never seen you have a bad day.

Jenny Hess makes it look like the easiest thing in the world! I'll bet her kids were all there at the Primary party on time and she probably even volunteered to help!

And I am sure Katie Anderson's 3 under 3 (not to mention Abby's, Karen's and Shaylyn's!) were all there with matching outfits and big bows in their hair!

And Jenn Carroll... with 6 under 9 years old.... offering to take Brighton if Cole needs some quiet time. HOW DO YOU ALL DO IT???

I am so thankful for friends like you all! You are all great examples to me. The best part of our friendships is that I never feel "not good enough". All of their successes make me feel like I am successful by association!

While I am at it... I need to journal my thoughts on my sweet boy, Brighton. After meeting with his teacher this week, we have learned that he is definitely not ready to transition into "normal" kindergarten this next year. This came as a major blow to us this week. All along, I just assumed that after a year of "special ed" kindergarten, he would be "over it" and ready to make the transition to regular life.

This is not the case at all. He will be doing the "special ed" first grade next year. Then it is my personal hope that he will be able to repeat regular first grade the following year. I have been told that if you repeat a grade, it is better to repeat 1st and 3rd grades. They are the tougher years. Kindergarten and 2nd grade are much easier. We know we want Brighton to be one of the older ones in his class, not one of the youngest. We also have appointments with a team of doctors and therapists next month to help us try to figure what to do to help Brighton. Sometimes it just seems like he can't control all of his emotions. He does not handle personal failure at all well, and he can not get the concept of sharing. He is going to be 6 in June... these are things he needs to get down. The teachers and doctors tell us this is all part of his special needs package. But autism is an illness that can be helped with the proper treatments and training. So we will do all we can to prepare Brighton for a successful teenage and adult life.

I want to end this post with my testimony of the love and strength that comes from knowing that I am a daughter of my Heavenly Father, who loves me, and I love him. I know that our family was formed before we came to Earth, and that our Family will be together throughout all eternity. Yes, I feel very overwhelmed, and often not nearly good enough. But I know that if I do my best, and then turn it over to the Lord, that he will magnify my attempts and make it work. That I can be a "good enough" mother to these two boys if I continue to try to be obedient to the commandments and live the way I have been taught by my own parents.

A little bit of bad, and a whole lot of wonderful!

We have had a little bit of bad, and a whole lot of good in our lives this past few days!
Cole's favorite parts of the hospital visits are the toys! He got to drive this hummer jeep around the morning while waiting for his surgery.

Cole's surgery went fantastic! He is such a little fighter! When they got in there, they found much more extensive damage then they ever realized. The doctor said he must have had a lot of pain with it. We never even knew! The surgery was a success, and Cole is doing so well now. We got to come home Sunday night. This was great, because we had originally been told to plan on a week. We were only there 3 days! It was big blessing. Cole hates IV's and of course being in the hospital is miserable. He is now just cuddling in mommy's bed all day for the next week. Hopefully we can keep him there. He is supposed to stay still and have lots of bedrest.
A couple of hours after Cole got out of surgery, Crystal (the new baby's birth mom) texted me that her water broke and she was in the hospital, and could I please come quickly. I got there about 11:00 Friday night. I had actually just gone to sleep at 10:00 and got her calls at 10:30. I had been up since 5am, so I was really tired. I went from CHOC hospital to the UCI hospital which was only 5 minutes away. (Yeahhh!!! Little blessings make life so much easier!) I stayed with Crystal all night. No extra bed or sleeper chair, so I sat up and helped her with her contractions all night. Her family and friends were all out partying, and said to call when she was really close so that they could be there for it. Crystal called them at 1:00am to check in and they said that Katelynn (Crystal's 3 year old) was still up watching tv.

Anyway, the good part of the story is that I was able to be with Crystal all night and all morning with just the two of us throughout the delivery. I got to hold her hand and help her breathe, and push... and do it all. It was just the two of us and the doctors and nurses. Crystal had made it clear to all the doctors and nurses that I was the mother of the baby and that she was definitely planning on giving the baby up for adoption. The hospital staff was (and continues to be... ) amazingly supportive of us. A couple have gone as far as to take me aside and tell me that they really, really want me to get the baby.

We had an amazing experience through the birth of this baby. It was beautiful, sweet, and so pure. What a great moment to remember! When the baby had come, Crystal told me to go over and be with the baby. It was so beautiful.
Then, while Crystal was pushing the afterbirth, and I was with the baby, Crystal's "brother/friend???," Jeremy, came running in really upset that he had missed it. He wanted to know "Why didn't you wait for me." Like we could wait. (He was supposed to be there the whole time and she had wanted him to cut the cord. Which... I got to cut!!!) Then there was a bit of a scene... It was horrible. He was very upset that I was there. He is adamantly refusing to let Crystal give up the baby for adoption. He is just her friend, not the birth father or her husband. But Crystal has been on her own since she was 13. She just craves love and protection and attention. Jeremy gives her attention.

Jeremy has now talked Crystal into keeping the baby. Crystal says it is just for a while. (weeks/months) He is very explosive and no one wants to upset him by telling him she is not going to keep it.

Crystal told the nurses to give the second wristband to Jeremy and called him the daddy. She had already said that he wasn't the birth father, but I think in her mind, she needed a male figure to be there for her. Her father is not there for her, and she has never had a healthy relationship. It is just sad... And the nurses were all so sad about Crystal giving the wrist band to Jeremy. They explained to her that only people with this wrist band could have any "rights" to this baby while in the hospital. Only they could go in the nursery and hold her. They strongly hinted that "maybe Charise should have this so that she can help with the baby..." but Jeremy won. It was such a yucky feeling.

By noon, I had been up for about 31 hours with only about 2 hours total of quick 30 minute naps. I was too tired to think straight. I went back to Cole's hospital and after cuddling him for a couple of hours, I went and slept from 3:00 to 6:00. It was HEAVEN! Sleep felt so good.

Right now, let me say that my all-time favorite charity is the Ronald McDonald House. This is where we stayed when we got Cole in Pasadena, and then I have stayed there a few times while with Cole at CHOC of Orange. It is such a blessing! Up on the 6th floor of CHOC Orange they have a Ronald McDonald wing. There is a nice lounge, a fully equipped kitchen, and four sleeper rooms. They are HEAVEN! I was able to sleep there (always free of charge) and it was so great.

Then Bill and I went back to UCI where Crystal told us that we were definitely taking home the baby. Absolutely! She was ours.
Then the next day she decided that it was too hard to tell her mom and Jeremy and his mom that she was not going to keep the baby. So we think she is going to keep it for a while and then call me. We are supposed to find out for certain tomorrow.
It is most likely that we will get Savannah in the next month or two... but somehow I think that makes it even worse. Crystal is still saying that she wants us to take the baby, just that she is not certain when. This makes me miserable and sick. When I think of where this baby will live and what she will go through... It is horrible.

I understand Heavenly Father's plan and I totally get that we are here are on Earth to be tested... but sometimes just knowing that does not make it easier. I am going to be fine, but I am not fine yet.
This sweet little girl, wherever she ends up... is precious. She is pink and perfect and it was a dream come true to be able to be there when she came to this earth to live.

So right now I am having a terrible, horrible, no-good, very bad day!! (Well, three days in a row.) I am doing ok, but then I am also definitely not ok. I kind of can't breathe, and I am crying a lot. But then I snuggle my sweet little Cole and he kisses my neck and I laugh and giggle with him and it seems like life is going to be just fine. But then I can't breathe and I start to cry again. I just need some time to process it all.

In Bill's and my life, I feel like I always have to be open to whatever child may come along. I never want to have the doubt or regret, or have to think, "If only I would have said yes that one time... " So that is why we have this roller coaster of emotions. I am very thankful for a social worker from LDS Famiy Services who is wonderful to listen and be there for me when I am loosing it! She listens and says the perfect things.

Another thing I am so grateful for are dear, dear friends. One example... Karen Hill called and asked if I needed anything. She was going to the store to get some milk for us because she had forgotten milk when she brought us 8 bags of groceries to the hospital. (I Love Her!) I told her that we actually had enough milk and we were ok. So she said that she was going to the store and going to get us something. Did I want to tell her what I needed or should she just get us something? I laughed and told her chocolate or strawberry ice cream would be great, because Cole is on a soft foods diet. Here is what she delivered an hour later.

Big, Big, BIG Month of February!

Hi friends and family,
We are announcing our great news officially!

I know with adoption it can be hard. You want to be excited and supportive of your friend, but you don't want to make her feel bad if it is not going to work out. I know that you feel bad not asking, because you want to seem interested, but you also feel bad asking because you worry that it is not the right time. Thank you to all my wonderful friends. You have asked "the perfect amount". As an adopting mom... the answer is yes, ask gently and be prepared for any answer.

For us this past 6 months, I know the answer has always been.... "We think so, probably yes." But right now it is looking like a 99% chance that we are having a baby girl sometime in the next week and a half! YAHOOOOOO! Yippeee yiii ahhhhh!!! It could be any day, but I am expecting it to be Tuesday, February 10. (But what do I know? I have never been pregnant before???) But the 10th works out really well for me. (Like that ever matters, right?)

Birth mommy Crystal's due date is Thursday, Feb. 12. Her first baby came one day early, and her second baby came two days early. So I am guessing three days early. But there are some health complications that have had us aware that she only has a 50% chance of carrying to her due date. So this baby might be here any day! (On second thought, I just decided that today is great for me! Let's have this baby today!!!! haha... "Let's", as though I have to do any of the hard part!)

Cole's surgery has been moved (as of 9:00 this morning...) to Friday, February 6. We will be in the hospital (CHOC of Orange) until at least Monday, February 9. If all goes well, we will come home Monday. But they have warned us that we might stay a full week. But I seriously doubt that. Cole will be miserable for two full weeks, and then hopefully moving back to normal the second half of February. With a new baby, it will be an interesting time for us!

We are scheduling play dates for Brighton after school as much as we can for the 9th - the 20th. We have been told the success of Cole's surgery is dependent on him not running or jumping or bouncing at all for a month after the surgery. HELLLOOOO! He is 3! And VERY active!!! He does whatever Brighton does!! So having Bright get to go to play dates for two weeks will really help us out all around.

Lots of you have been so cute and supportive of our little family and you have asked about how you can help. We appreciate all of you so much. We are so blessed to have such great friends to help us at the crazy time in our lives.

Also, we are getting rid of our home phone line. From now on we will only have our cell phones. Our home line will give you my cell number for the next 3 months. Bill's cell is the same first 3 numbers as mine, but then it ends in 3784. I figured this is the best way to let you all know!



I know! I know! These pictures have nothing to do with this post... but seriously! How lucky am I to get to be the mom of such amazing and adorable little spirits sent here from our Father in Heaven! I am feeling so blessed this month!! They are both such fantastic brothers. Savannah must be up in Heaven dancing with joy knowing that she is coming to such a great family who will love her SO MUCH! Can you imagine how excited she must be right now? I am so thankful that I know families are forever. Our family was created long before we came to earth, and we will continue to be a family forever. Long after we leave this life on earth, our family will be together. Thank you Heavenly Father for such an amazing plan of happiness!!!

We love you all,
Charise and Bill
Brighton and Cole

Cole's 1st Year... By the Numbers

On Cole's first birthday, I journaled the following. I didn't share it at the time. It was just too overwhelming. But I don't want to ever forget how amazing he is.

Cole’s first year…by the numbers

24 ½ weeks along, 15 weeks early

1 pound 5 ounces, 12 inches long

144 days in the NICU

5 major surgeries in the first 20 days

4 hospitals

33 Occupational Therapy appointments

14 Pulmonary Appointments (3 hours each)

3 RSV appointments (Horrible Painful shots)

???? IV’s (each one leaves a small, permanent white bump on his hands and feet. The next time you see Cole, look at his hands and feet. He has lots of tiny scars on them from all his IV’s.)

13 ½ pounds (Finally!)

26 ½ inches long

30 ounces of formula every 24 hours

50 minutes spent on breathing treatments daily

339 days of oxygen 24 hours a day (Now we are only on oxygen at night!)

14 medications daily

Countless surgeons, doctors, nurses, respiratory therapists, dieticians, occupational and physical therapists and child life specialists.

An insane amount of hours spent on phone calls trying to coordinate CCS, Medi-Cal, Insurance, Regional Center commitments, and adoption issues.

1 tiny, perfect miracle for 1 incredibly thankful family.

This year I have learned... Life doesn't have to be perfect... To Be Wonderful!

We are good.

Hello all,
We are home from the hospital and doing well. The surgery went really well. However, part of the procedure was an endoscopy, where they video'ed his insides to look around and take a biopsy. During this they noticed that he has a hernia where his esophagus and his stomach connect. He will need surgery again in the near future. This is something that the GI team there today could not do themselves. He needs a specialist surgeon to do what is called a Fundoplication. I think that will be scheduled for about a month from now.

The gave him some crazy drugs and he was hilarious!!!



His head was wobbley, and his legs were like jello. He kept laughing so hard he got the hiccups and squeeked for about half an hour.




When he wakes up and sees the iv in his hand, he is like an ape going crazy. He hates it! I think it scares him more than anything else. Because of this and other surgery and medical tapes being placed on him, he HATES stickers. The grocery clerks always try to give him stickers (like cute cartoon stickers) and he freaks out. Chronically ill children DO NOT LIKE stickers!




They thought he was so cute. (Of course he is!) So the nurses gave him a present. A dump truck! He was very proud.

BEFORE:
Mic Key Button for the G-Tube.

AFTER: Jejunostomy
The food will go directly into his small intestine. (Jejunum)
The tube is a lot longer, and does not have the nice, easy close off port. The g-tube was much easier and user friendly. This new one will take some getting used to. It is really bad if it gets pulled out... ER and another surgery. So we will just have to learn to be really careful.

We are off to the hospital!

Hello friends and family,
We are off tot he hospital. My little sister Mitzi will update you all here on our blog.
Thank you for all your love and prayers!
Charise, Bille, Brighton and Cole

Glad Tidings of Great Joy!

Happy Holidays!
Our family is very happy this holiday season. We have so much to be thankful for.

Brighton came home from school today and had learned this new song. I know it is because I am his mom, but I think it is the cutest thing ever!



And now a little more about our Cole-ee-oh-lee. We are considering ourselves very blessed. Cole is at home, and is really doing very well considering.

This will be a long post, but I will try to condense it as much as possible.

Last week, on Monday, the doctors gave us a choice of bringing him in to the hospital that day to be admitted for a few weeks, or scheduling a surgery for this week. He is not keeping enough food down to sustain nourishment and life. Well, I have lived at the hospital for weeks on end in the past, and it is not fun at all. So our little guy will be having another surgery this week. On Wednesday morning he will be admitted to CHOC Hospital for an 8:00am surgery. They will do a J-Tube and an endoscopy. These are not major surgeries... He should be fine. They will only keep him overnight if there are any complications.

Long story short... Cole's lungs are his Achilles heel. He has chronic lung disease. Apparently that is very serious. I asked the doctor this week why Cole was having such a hard time. The doctor looked at me like I was an idiot (but in a nice way) and said basically... duhhh... he has chronic lung disease. Basically he was saying, You should be thankful your little boy is walking and breathing without oxygen. He is a very sick little guy who happens to be a major miracle that none of us even understand. Quit your whining and realize that he is one of the biggest blessings we have seen with this kind of expected outlook. Didn't we tell you that he would be on oxygen full time until he was 7 or 8 years old? Didn't we tell you that he might never walk on his own? Yes, your little boy is sick. But amazingly enough, he is defying all odds.

Wow... put me in my place. (Thank you Heavenly Father for all of your wonderful blessings in this little boy's life!!)

Basically, your lungs are connected to every part of your body. Cole has terrible skin problems... because of his lung damage.

He can't get enough calories, because his lungs work so hard that he burns 3 times the normal amount of calories every day. They often tell us, Imagine if you ran a marathon EVERY DAY of your life. How many extra calories would you need to survive? So this is why he has the g-tube and backpack.

Any germs that come around, Cole gets and keeps. So a cold that I get sick with for a couple of days can easily put Cole in the hospital. Most of his doctors would very very happy having Cole be a "bubble boy". They advise us strongly to keep him away from anyone who is sick, or interestingly enough, anyone who smokes. Apparently the smoke from someone's clothes can completely shut down his entire system.

When Cole coughs, he throws up. When he runs (Which he does a lot!!!!) he throws up. When he cries hard, he throws up. When he is angry at you (2 year old tantrums) he throws up. The endoscopy that they are doing on Wednesday is to see what damage has been done so far, and to help determine future courses of action.

As you know, Cole's vocal chords are severely damaged. The constant throwing up is beginning to eat away at his esophagus and vocal chords. This can not be allowed to happen. What he has now is a G-tube. It puts the formula directly into his stomach. A J-tube is a tube that goes into his small intestine. The formula will bypass the stomach altogether. The pro of this procedure is that he will not be able to throw it up nearly as often. The con is that you really need to have your stomach help digest your food. Having the formula go straight into the small intestine can be much more painful, and cause more problems... We are waiting to weigh the pros and cons once we see how this procedure affects Cole's life. It will be an interesting few months.

(I know dad, more talk about throw up than you ever wanted to be a part of. Believe me... it is NOT my greatest wish to discuss throw up all day either!)

Thank you to all the friends who have offered to help with meals, Brighton, church callings and everything else. Your love and support mean the world to us. We especially thank all those who have kept Cole in their thoughts and prayers.

So I always like to have a picture to make the blog posts more fun. What can I show for this post? Well, this video is not as fun to watch, but it gets the message across. Don't say I didn't warn you!


Cole is crazy active. We are doing everything we can to keep him in the wagon or stroller to conserve any calories that we can. Brighton is a great help with this. He will hold Cole's hand as we walk around with the stroller, so that Cole feels included. And Bright is great to make the wagon fun, instead of a punishment.

Cole doing the Limbo. No way was he going to miss out on any of the fun!!!
Wagon time at Fashion Island. Very wonderful brothers.


These were taken about 6 hours before the videos of him choking and struggling to breathe in my last post. He was healthy and happy and having a fantastic night! He can go from 100% great to nearly dying from hour to hour it seems. We went from the Kids Are Music show where he did the limbo to the Fashion Island tree lighting. You can kind of see him doing his Nuttin for Christmas on this video link... more to come later.




These boys are the greatest thing in my life. Glad Tidings of Great Joy to you all this holiday season!!!

Sick Little Guy

This is one of those "journal" blogs for me to remember and try to find a pattern.

Cole had another hard weekend. Everything was fine Saturday. We had no idea that he would get so ill in the middle of the night! Saturday we had a Kids Are Music show in Dana Point. Cole was adorable and sang his little heart out! Then we went to the Tree Lighting Festival at Fashion Island. It was amazing. The show during the day was really hot. We kept joking about needed to go find an ice cream store, because it felt like August heat! By the time we got to the tree lighting it had turned really cold. But we had planned accordingly. Cole was wearing three layers of clothes, and we had blankets, and he stayed in the wagon or in our arms almost the entire time.

Bill went out of his way to be on the lookout for any smokers. We have been told that even someone who smokes holding him could be potentially fatal. So if you smoke, please be careful! Cole walking by a smoker could be really dangerous.

There were some "fake" hay bails at the daytime event, but Bill thinks they were boxes covered with turf and artificial hay.

Here is what Cole sounded like during the night. It went on for hours. He had to struggle for every breath. He would sleep fitfully on and off, but not much. He was so miserable.
(Note: the black mark on his arm is his mickey mouse airbrush from the festival earlier in the day. He is very proud of it.)


Then Sunday afternoon he had a fever of 101, and Sunday evening he was 103. At 4am Monday morning he was breathing much better, but still miserable, and still 103.5 temperature. We give him Albuterol breathing treatments, but it doesn't seem to change anything. He throws up a lot (30 times) because the struggling for breathes becomes choking gasps, and that produces throwing up. (I did 8 loads of laundry yesterday.) I also give him 4 ml (almost 1 tsp.) of Children's Tylenol Plus. I do not notice that helping to bring down the fever at all, but it is really all I can think of to do.



(Note: This is Bill holding him. My sister Mitzi was thinking it was me. How funny!)

By 7:30 Monday morning his fever was gone, and he was breathing fine. He seemed tired, and worn out, but ok. Monday afternoon his temperature started up again, and by 5pm it was back at 102.

Tuesday morning he is still achy and whiny, wanting to be held, but doing better for the most part.

Whew! I am exhausted! Billy is a great husband and dad to help me with the crazy nights involved with this little guy.

I am Thankful for ...

I made a turkey dinner tonight, and my house smells amazing. It turned out so great! I felt like an actual domestic goddess! The funny thing is, when I took it out of the freezer to thaw a few days ago, I totally forgot that Thanksgiving is 2 1/2 weeks away. I have had it since May in my freezer, and I have always heard that you should not keep meat frozen longer than 6 months, so I thought, "Oh yeah, I have that nice Turkey in there, I'll make that up. It will be a fun dinner." Duh!!! 2 1/2 weeks before Thanksgiving!!

Brighton kept asking me if this was our Thanksgiving Feast. Well, that made me think of what I am thankful for. Today in Primary the kids all went around to say what they were thankful for, and a ton of the kids said food. And it made me think how thankful I also am for food. But I feel like I have learned such a respect for food this past two years. I have learned so much about the word of wisdom, and eating portion sizes. I guess what I want to say is #1. I am so thankful for delicious food!
And #2. I am so thankful for gastric bypass surgery. I have a whole new life since my surgery, and it is wonderful. I am thankful for parents, siblings and especially a husband who supported me in the decision to have the surgery. I am lucky to have such an amazing blessing.

Lots of my friends now did not know me 3 years ago, so for their benefit, and for my future posterity... I will post some before pictures.

It is funny. When I was bigger, I never thought of myself as huge. When I would see a picture of myself, I would think, "Who is that?" I did it every time. Inside, I felt like a smaller sized person. Not thin, but never morbidly obese. I was just a happy mom with a great husband and two amazing kids. I am so thankful for the opportunity to have a life changing experience like this.






Seriously... What A CUTE Family!!! Am I so lucky or what???

Thank you Heavenly Father for so many wonderful blessings, and thank you for letting me live through the scary parts of the surgery so that I could be here to enjoy such a wonderful life!!