Monday, April 28, 2008

Ear Infection

Dan noticed this morning that Drew felt warm. We took his temp and it was only 99.5. Normally even I wouldn't call the doctor for a temp that low, but then Dan told me that Drew told him his ear hurt twice. And said the same one both times. Since I was already going to the UCD pharmacy to pick up his meds, I decided to call the doctor and see if they could squeeze us in just to check his ears. They did! They are so great!

So we picked up the medicine (I called ahead this time to make sure it was ready) and then went to see our new pediatrician, Dr. Bullen. He's always been in the practice we go to, and he's seen Drew many times since he always gets sick when his own doctor is gone, but we just recently switched to have him as our primary care doc. I really like him, partly because he really likes Drew. Anyway, he checked him out and sure enough Drew has an ear infection. And of course he gave me antibiotics to treat it. I was willing to put up a fight if he was going to try to give me the old "it'll go away on it's own in 10 -14 days" routine. Sheri, the nurse I talk to all the time on the phone, was there and gave Drew six different dinosaur stickers because she loves him.

Unfortunately I asked Dr. B to look up the cervical spine x-rays that we had done about a month ago and Drew's C1 and C2 look like they might be fused so now he needs to have a CT scan. They'd like to do it before surgery since it might affect how his head is positioned during surgery if he has a problem. It's kind of a bummer because he will have to be sedated and that likely means he will have to have an IV, and he has a terrible time with IVs. Me and my questions.

We drove back home to our regular pharmacy to pick up the amoxicillin where Drew got to visit Darla and Christine (the pharmacy techs). They are both so sweet and always talk to him and ask about him if he's not with me. He showed them both all of his dinosaur stickers and gave them high fives. I gave him his first dose of antibiotics tonight and he's sleeping peacefully in his bed right now. I love that kid.

Weekend Update

Here's a quick recap of the weekend's events. Just like on SNL. Only not as funny. :)

Blood Test
Drew's blood test on Friday morning went better than we could have hoped for. This time I placed the prizes that Grandma sent in a bag on the desk during the stick. Then, when he first got poked and he was starting to cry and say ouch, I pulled out the first prize, a dinosaur that makes noise. It really distracted him and he forgot about the needle for a while. But then he looked back at his arm and started to get upset again and I pulled out the second prize, glow in the dark dinosaurs, and they worked like a charm until we were done. Good job Drew! He picked out a sticker for himself that said "Brave Hero" and one for Ava too. And he did mention that it was Ava's turn for a blood test again.

McKinley Park
As a reward for being so brave during his blood test we decided to go to the park. I packed up the sand toys and lots of snacks that morning so we were all set. The kids had fun playing in the sandbox and climbing on the structures and watching the ducks, geese, turtles and squirrels.



Insurance
I already shared that dramatic story, so we can skip it here. But I will try to make more progress in this area this week.

Parties
I had a birthday party for a friend at a country line dancing place. It was a lot of fun. We learned the Hawaiian Shuffle, the Cowgirl Twist, Cotton Eye Joe and one other one that I forgot the name of. And they had 25 cent beer! Dan and I also attended an engagement party for another friend and it was very sweet. Lots of yummy food, beautiful backyard and very touching toasts.

Babysitting
I got to watch Baby Chloe while her parents were busy moving into their new house on Saturday. It was so easy having three kids! I told Dan I was ready for the next one and he was bummed. He thought this day would be more difficult and I would see that three is too much to handle. But Chloe is a really easy baby and I'm no fool. I know that every day wouldn't be that easy and it would be much more difficult if I was trying to get three kids out of the house on a time schedule. So this matter is still up for discussion.

22q Meeting
Immediately after church on Sunday we had a family meeting for parents of kids affected by Chromosome 22q11.2 Deletion Syndrome (that is the technical name for DiGeorge Syndrome) at the MIND Institute at UC Davis. There is a researcher there who is doing research on the brain differences and learning differences in kids with 22q. I went last year by myself and it was pretty depressing. It was the first time I heard that these kids are predisposed to mental illness, including schizophrenia. So I had Dan come with me this time. There were four talks. One on Medical & Behavioral Issues, one on Intervention Resources for Learning Difficulties, Executive Dysfunction and Emotional Concerns, one on Temperment and Mental Disorders, and one on the research that's been done and on what is being started.

The part that concerned me most was why these kids are prone to mental illness. While some of the reason is related to their different brain development, a big part of it is due to having illnesses. The sick role is a phenomena that affects the entire family, not just the sick child. And traumatic surgeries increase anxiety and PTSD in these kids. That just makes me sad. Because even though everyone tells me that Drew won't remember his heart surgeries, this proves that it does still affect him in a significant way. And there isn't anything I can do about it, because when you need heart surgery to stay alive, it doesn't matter what the other risks might be.

Other disturbing statistics include:
57% of kids with 22q will develop some type of mental illness
30-50% will develop ADHD
up to 60% will experience anxiety
25% will be affected by schizophrenia

While those numbers scare me a lot, the researcher did point out that you don't have to worry about what the future holds. He said just deal with today, and if something comes up deal with it then. That's easier to do when your child is perfectly healthy, but I see his point. I think it would be helpful to know what the risk of all those things are in the general population, just for comparison. Anyway, for anyone who is interested, they will be posting all the slides and the video from the meeting on their website within the next week or so.

Saturday, April 26, 2008

Kate's Kart



A touching story of one little girl who's short life impacted many and how her family is making sure that her memory will live on in the hearts of others. Please watch the video and consider what you can do to help. And make sure you have some kleenex handy.

Just when you think it's over...

It's not.

Yesterday was such a roller coaster of a day. I woke up thinking all was well and we had everything worked out with the insurance and we'd be going to Stanford for surgery. Up. While I was at the park with my kids I got a phone call from UCD Managed Care saying her rep at Health Net is certain that we don't meet the out of pocket maximum and will have to pay 20% of the total bill. Down. She gave me her direct line and asked me to call her. I did later that day and she explained to me that we need to have two members of our family each pay $3500 in order to meet the out of pocket maximum. If we only have one member pay $3500 we keep paying our 20% until the second family member meets the $3500 max. Way down. Laying on the couch, crying my eyes out, what are we going to do, should we just give up DOWN.

Then she calls back half an hour later and says, "I just don't like this, I am going to put my name out there and document that I told you that it won't cost more than $3500 and you take your baby to Stanford for his surgery." Then I'm sobbing on the phone, I can't believe it's possible and I can't take any more of this up and down business. Then I started thinking, that's really sweet that she is willing to do that, but how do I know that just because she told us we could go means we can actually go? So I get out my Evidence of Coverage and read through it all again. And I think she's wrong. I think we really shouldn't have to pay more than $3500 for Drew's surgery. So how many people do I have to talk to, who are the right people to talk to in order to figure this out?! So, here is what it says. Tell me what you think it means.

Out-of-Pocket-Maximum-Select 2
The select 2 out-of-pocket maximum (OOPM) amounts below are the maximum amount you must pay for select 2 covered services during a particular calendar year, except as described in "exceptions to OOPM" below.

Once the total amount of all copayments you pay for select 2 covered services under this evidence of coverage in any one calendar year equals the select 2 out of pocket maximum amount listed below, no payment for select 2 covered services and benefits may be imposed on any member, except as described in the exceptions to OOPM below.

The select 2 OOPM amounts for this plan are:
one member..........select 2 (PPO) $3500

If 2 enrolled members of the same family have each met their individual out of pocket maximum amounts, then the out of pocket maximum will be considered to have been met for the entire family. No copayment or coinsurance for covered expenses shall be required from any enrolled member in that family for the remainder of that calendar year.

(none of the exceptions to the OOPM applies to us)

Friday, April 25, 2008

Fun Morning

I started bringing Ava to gymboree a few weeks ago while Drew is at preschool. I thought she would love it because she is constantly climbing and jumping at home. She did really like those parts right away, but she preferred to do her own thing and not participate in circle time or singing. Well yesterday she did everything! It was so cute. She sat in the circle, clapped her hands when it was time, shook the maracas at the right time and generally followed the directions of the teacher. She even sang the "Where is Gymbo song." She had so much fun! And I remembered my camera this time!

Pretending to be cookie dough inside the mixer

Dumping out the dough and the "sugar"

Ava and Mommy baking in the "oven"

Enjoying parachute time

Today Drew has another blood test to check his calcium levels one last time. Then we're going to try to do something fun. Maybe the gym or the park. We're also having our new couches delivered sometime today. Tonight I have a birthday party for a friend. Tomorrow we are helping our friends move, then attending an engagement party. And Sunday after church we have a family meeting for parents of kids with DiGeorge Syndrome. Last time I went to a meeting like this it was pretty depressing, so I'm making Dan come with me this time. That's our weekend in a nutshell. Hope everyone has a nice weekend!

Wednesday, April 23, 2008

One Month

The past week I have been on the phone with countless member services & managed health care people. The information I've been getting has been conflicting and I've been getting all kinds of advice. But today, I am feeling pretty confident that I have the correct information about our insurance coverage for surgery at Stanford. Today I spoke with a lead and made sure that our conversation was documented. She says (and she sounded very confident) that we will pay a maximum out of pocket amount of $3500 for Drew this year. As long as Stanford is a contracted hospital (it is) and our surgery is pre-certified (I will make sure that it is), we will not owe Health Net any more than $3500. There is a slight caveat though. Not all of the providers at Stanford are necessarily contracted with Health Net. If some of them treat Drew while we are there our insurance will pay them the "customary & reasonable" rate, but that rate may not be what they actually charge. They could hold us responsible for the additional amount. Even with this potential problem, this is fantastic news and an answer to prayer! I feel like God made a way for us to go to Stanford. I also think if we had been approved originally we probably wouldn't feel as grateful to have the opportunity to go to Stanford.

So anyway. Today is one month exactly before surgery. I think that I've been doing really well so far, but I have been staying busy with the insurance business. Today I was feeling sad for no particular reason and I think it's my subconscious mind recognizing what will happen one month from today. I was also thrown for a loop yesterday when I read a letter I received in the mail. The pastor of our church is leaving. The reasons they are leaving are valid and I respect that they need to do what is right for their family. But his last day is two days after our surgery. I know it is incredibly selfish, but that is a really bad time for me. I don't do well with change anyway. I don't want a new pastor, or no pastor. I want MY pastor. And even though it won't play a huge role in what happens at the hospital, I've just become accustomed to having Eric stop by the hospital whenever Drew is admitted. He always calls to check on us and offer prayer. And now he will be gone! And beyond surgery I have an attachment to Eric. He baptized me and Dan. He dedicated both of our children. He helped me struggle through some of my issues with suffering and pain and why God allows it and how God uses it in our lives. I know the Christian-y thing to say is that maybe God is opening a door to even greater blessings in our lives. And a church is more than just a pastor. I know. I just feel a little hesitant right now. I'm sure I'll come around soon...

OK, now for a cute story to make me feel better.
Yesterday Ava, Drew and I were sitting on the couch. And Drew put his arms around both of us and said "This is the best family EVER!" Dan was in the kitchen, so Drew said "Dad, you want to be a family with us?" And Dan stopped what he was doing and came over and we had a family hug and all repeated over and over again "best family ever!"

Also, I have the best husband in the world who made me a pina colada tonight! Thanks Honey!

Sunday, April 20, 2008

Wine Country

First, the insurance update:
We think (and are praying, hoping, wishing, and crossing our fingers) that even though the HMO portion of our insurance denied our request to Stanford, we can still choose to go there with our PPO portion. The hang-up has been the 20% copay, which would be way too much for us to afford. But, we found that our individual maximum for one year is $3500. We have to double and triple check that Stanford is a contracted hospital and that all the doctors we might see are contracted also, but if they are we can keep surgery for May 23 with the amazing Dr. Hanley and only pay $3500. I say that is a bargain!

And now back to our regularly scheduled programming.

We had a busy weekend! Saturday morning we bought a new car! Well, not brand new, but new to us. It is a 2005 Nissan Maxima and it is very pretty. It is white with leather interior and it is a stick shift. It is our car for going places without the children. :) We have lived with only one car for about two years now and it really wasn't too difficult. Since Dan works at home it is a rare occasion that we both need to use the car at the same time. But it was becoming a hassle more and more often so we decided it was time to purchase a second vehicle. Dan found a great deal on craigslist and now we have a pretty new car!

Our new car

Saturday afternoon I visited the Amador wine country with some friends. We did a little wine tasting and enjoyed the beautiful scenery. I didn't take any pictures, but I wish that I had! A note to anyone who is planning to visit, all the wineries are closed by 5. We didn't know that ahead of time so we only got to visit two wineries, but we still had fun!

My parents also flew in yesterday for the weekend, mainly to attend my cousin's going away party on Sunday. But they were here hanging out with the kids and Dan while I was gone on Saturday. Then this morning they stayed with the kids while Dan and I drove the new car to church. My parents took them to the party early and we met everyone up there later. I love having the grandparents here! It was so fun driving by ourselves! I could pump my loud hip-hop music and not worry what little ears might hear. And I sang loud and danced around in the passenger seat and Ava wasn't there to admonish me with her "no dancing!" AND we drove by cows, horses, sheep and goats and didn't have to point them out to anyone! And the most fun part? We stopped at another winery (Bella Piazza) on the way to my aunt's house (she lives in Sutter Creek, right by the wineries I was at yesterday) and tasted their delicious wines. We even ended up joining the wine club and buying a case of zinfandel!

Then we headed to the going away party where there was enough food to feed an army! Adam and Becky are moving to Yellowstone in a week and we are really going to miss them! My cousin Adam used to take care of Drew for us when I was working part time. He was so good with him and would work with him on his OT. Both kids just love them! We are definitely going to have to make a trip out to Wyoming!

Adam and Becky with the kids at Easter

Adam with Drew when he was a baby

Thursday, April 17, 2008

Field Trip to the Zoo

Today Drew's preschool class had a field trip to the Folsom Zoo. We met there in the morning and played on the playground for a while, then walked through the zoo. Afterwards we ate a picnic lunch and rode the train. Drew's favorite animal was the tiger, which we got to see eating raw eggs! Ava's favorite was the horsey. Although both kids really liked the chickens and peacocks that roam freely in and around the zoo. I took the morning off from worrying about insurance, figuring I'd have time for that once we got home.

Swinging before the zoo

Balancing with a friend

Drew and Miss Cathy

By the monkeys

Peacocks

Riding the train!

So, after a short rest to gear up for the phone calls I'd be making I started in on it. I looked up CCS and Medi-Cal online, but didn't see anything that applied to us. I called the cardiologist to get his opinion on what to do next. I mentioned the appeal and he said yes we should do that, but that he doesn't think it will work, even with an awesome letter from Dr. Hanley. He had a couple of ideas about changing insurance, or changing medical groups to one that does routinely send kids to Stanford, but I don't really like those options. For one I'm scared to change insurance for fear that they would deny us any coverage for Drew because of his "pre-existing condition." And Drew is seen by a lot of specialists, and that would mean leaving those doctors behind to find a new pediatrician, endocrinologist, immunologist, cardiologist, etc. The best option that Dr. Parrish brought to my attention was to inform Dr. Hanley of our situation and see if we could work out some kind of "deal" with our portion of the copay. He said Dr. Hanely could probably call the business office and waive our co-pay if he wanted to! Or work something else out, like a smaller percentage, or a more manageable flat rate. So I sent him an email this evening and I'm hoping we get a response soon. I feel a little embarrassed to ask him to do that for us, but I guess it can't hurt to ask.

I also spoke to my friend's husband who works for the Department of Managed Health Care and knows a lot about denials/appeals. He said if Stanford is a covered hospital on our insurance plan, which I believe that it is, they may choose not to cover the physician's fees but the hospital stay itself could be covered. Then we would only owe a 20% copay on that portion of the total bill. He is going to look into it and make sure. So I'm feeling a little more hopeful today. I guess we'll take it one day at time and see what tomorrow brings. Which reminds me of a verse I like from Matthew:

Don't worry about tomorrow, for tomorrow will bring it's own worries. Today's trouble is enough for today.
~Matthew 6:34

Wednesday, April 16, 2008

Disappointed

Well, I got the phone call I've been waiting for this morning. A sweet lady named Mollie called from UCD's managed care department to tell us that we've been officially denied our request to go to Stanford. The reason is that they have determined that UCD can offer the same level of care as Stanford. I disagree. Other bad news: they can also offer the same level of care as UCSF. So we've been denied to go there too. Because our insurance is POS we can choose to still go to Stanford and pay a 20% copay. So, what is 20% of a million dollars...oh, way more than we have to spend.

Of course I sobbed on the phone with Mollie (poor thing, I bet that happens a lot) and she said she is going to help us find a way. She is going to contact CCS to see if we qualify (we definitely don't qualify for income, but we may be able to qualify with specific diagnoses) and they may cover the copay. The other option is to begin the appeals process, which I probably will anyway, but I have to wait until I receive the denial letter in the mail and then the process takes about 30 days. We only have 37 days until our scheduled surgery date at Stanford. Of course, the final option is to just schedule surgery at UCD.

My heart is heavy. I am so disappointed. I was really hoping and praying that we would be approved on the first try. I know it's not the end of the world, and we have time to work it out. I know Drew will have the surgery that he needs and it is in God's hands. But it is so frustrating. We already had a date and a plan and it feels like we are starting over from square one. We have made plans for the summer around a surgery date of May 23. If that date changes, so do all of our plans.

Monday, April 14, 2008

Sunday Afternoon

What a hot weekend we had! Yesterday it was over 90 degrees! (Don't worry Mer, it's not going to stay that way, today it is cool and cloudy and windy.) So after church, (just Drew and I went, Ava still has a cold) we got out the whale pool! The kids put on their bathing suits and had so much fun playing outside in the water. It was a really nice Sunday afternoon. I had one of those experiences when you catch yourself completely enjoying the moment, and realize how perfect everything is RIGHT NOW. I wish it could be that way always. I took a cute video and got some funny photos from our afternoon.



video

At church our pastor discussed why God allows suffering, a subject I have wrestled with a lot. I thought he did a very good job with the sermon and I may write more about that later. In the meantime, if you'd like to hear for yourself what he said you can listen to that here.

Saturday, April 12, 2008

Weekend Fun

Today I had a pretty mellow morning with the kids, just hanging out at home. Ava has a little cold so we couldn't go to the gym. :( But I did manage to get them dressed and to the toy store to buy some more sand and sand toys for our sand and water table. The weather was so warm today (88 degrees!) that we needed something fun and wet to do. They helped me clean the table since it had been out of use since last summer then we filled it with water and sand. They had a lot of fun, but made a big mess! Unfortunately I didn't get any pictures of them playing with the table, but Dan did get some of the aftermath.


The kids were so cute this morning. While they were eating their snack they sat side-by-side on the couch with their arms around each other. I had to seize the opportunity and snap a picture. It's not often that they enjoy each other's company long enough for me to get my camera out! Also, when I was holding Ava this morning because she wasn't feeling good Drew came over and gave her a hug and said "I'm sorry you're sick. Can I pray for her?" I told him I thought that was a good idea and he folded his little hands and said "Dear God, Thank you for Ava and please make her better. Amen!" Melted my heart!

Wednesday, April 9, 2008

Calcium and Insurance Update

Just wanted to post a quick update.

We got Drew's calcium levels yesterday and they are right where they should be. Yay! Down to only two medications!

The pediatrician called this morning and is going to contact the insurance company today. He said it will probably be denied initially because that is what they do. But I should hear from the managed care people today or tomorrow. At least something is happening.

UPDATE (thursday):
The managed care guy called today. He spoke with the pediatrician, Dr. Parrish and Dr. Hanley. The medical director in the department of cardiology at UCD will meet with Dr. Parrish on Monday and then make his decision. We should know early next week if we've been approved. If not, the fight will begin. Please pray that they give us their approval next week!

Tuesday, April 8, 2008

Assessment

Drew and I drove out to Palo Alto on Sunday afternoon to stay with Grandma Kathy before his developmental assessment at UCSF on Monday morning. My friend Katie and her cute baby Chloe joined us to keep us company and to help out with accessing the carpool lane on the way home. Thanks guys! We got into PA around 7 and Drew spent some time playing cars and airplanes with grandma. In the morning we left the house by 8:15 and got into the parking lot at UCSF right at 9:30. His appointment lasted more than 3 hours and since he is four now it was different than the previous times he's been assessed.

I had told him we were going to the doctor to play games and puzzles and there wouldn't be any shots or pokes. I also promised I'd stay with him the whole time. The psychiatrist asked him lists of questions (how old are you, do you have any brothers or sisters, i'm thinking of an animal that meows-what is it, what can you tell me about shoes, etc.), had him copy patterns with blocks, did analogies with pictures. Not so exciting for a four-year old to sit and listen for 3 hours! He had one ten minute break in the middle, but that was it! He did really well, but was getting tired and disinterested the last hour. They also did a quick neurology assessment because Drew was part of an MRI study before his first surgery. His reflexes looked good, but his balance isn't great. I'm also concerned about his fine motor skills, so we'll see what the report says.

After the appointment we visited with Tina and Baby Caleb who is recovering from his Glenn at UCSF right now. We had lunch across the street and had a nice visit. I took a quick look around the UCSF Bookstore and found another reason why I feel good about having heart surgery at Stanford. Dr. Hanley wrote the book on Pediatric Cardiac Intensive Care. Seriously.



I was really appreciating Katie and Chloe on the drive home when we got to fly by all the non-carpoolers on the freeway. We still didn't get home til after 5 and I was pretty tired. So was Drew! He fell asleep in the car and then slept until 9 before waking up, eating dinner and watching a movie. He went back to bed around 11.


As for Ava she did great without her pacifier while we were gone. Dan said she went to bed without a peep on Sunday night and did wake up once, but fell back asleep within ten minutes. Then on Monday she took her nap without crying and went to sleep that night without crying. She did wake up once last night and cried for a while so we brought her in bed with us. That will be the next habit we have to break. :) But I am very proud of her, she is doing a pretty good job.

Today I am feeling pretty tired. This morning I worked in the childcare at my mom connection and hung out with 12 two-year olds. That alone would be tiring, but when it was over and I went to pick up Drew he was in the Director's office because he had lost his outside time for not listening to his teachers. I told her about his assessment yesterday and how he was probably pretty tired of sitting still and listening after that and she did say that might explain it. But when I asked if he usually had trouble listening she said it had been getting worse lately. Which makes me sad because my mind automatically goes in two directions. 1. Maybe he knows what's going on surgery-wise, even if it may be subconsciously, and he is acting out because of it. 2. Maybe it's because of his DiGeorge syndrome and his behavior problems are beginning and it will just get worse. Either way, I'm not really sure what to do because he needs to listen to his teachers so I feel like I want to discipline him, but I also feel like he already had his punishment at school by not being able to go outside. I think I will just talk to him about it and work on listening today. I also am feeling a little overwhelmed by sadness. Just thinking about sick kids, kids having heart surgery, kids with cancer, kids with parents that can barely take care of them, it just seems so unjust. And then I think about my boy heading into his third heart surgery and I just don't want to do it. I know it has to be done, but every part of me wants to just run away and pretend like it's not happening. Maybe I need to sit and have a good cry, then pick myself up by bootstraps and get this house into shape. Even though I was only gone for one night, things have really fallen behind.

Sunday, April 6, 2008

Projects

Tonight while I was making dinner Dan was busy doing some jobs around the house, so I didn't have help with keeping the kids out of the kitchen. I hate trying to cook with little people under my feet! But I broke out the playdoh and they played quietly until dinner time! I have a new love for the maker of playdoh.

Thank you Playdoh!
Chair Project
I've been saying that I'm going to re-cover my kitchen chairs since we moved more than two years ago. The kids have managed to get them nice and dirty and I just don't have it in me to spot clean them. So I bought some fabric and, with the help of my lovely friend Kate, re-covered them last night. I think they look a lot better! I am seriously contemplating making vinyl slipcovers for the kid's chairs, but it seems like something only a grandma would do. I did at least scotch guard the fabric so hopefully it will help repel some of the stains.

Before-Ugly stained chair

After-Nice striped chair
Paci Project
It's a good thing the chair project went so well, because the paci project has been a disaster so far. I decided yesterday that Ava is ready to give up her pacifier. She only uses it at naptime and bedtime but she's starting to try and keep it after she wakes up. So I thought she was getting too attached and it was time to say goodbye. I've been telling her for a while now that we were going to give her pacis away to the babies so I told her in the morning that she was a big girl now and the babies needed them. She didn't seem to care. Until nap time.

When it was time for her nap she went down ok with her blanket and bear and was quiet for a few minutes. Then the screaming started. She never mentioned the paci, just cried and screamed "mommy" "daddy" "bottle please" "all done" etc. It was so sad. She would calm down a bit and then work herself up again. This went on for more than two hours! I would check on her every 20 minutes or so, but we finally gave up and got her up. So she had no nap. She didn't even seem tired.

At bedtime I thought it would be much better because she must have been exhausted. And it was! I told her she would get a prize in the morning if she went to sleep like a big girl with no paci and no crying. She cried a little, but was asleep within ten minutes. Yay! She woke up around 12:15 am and screamed for two and a half hours. We would take turns trying to rock her and calm her, but nothing was really working. She didn't want to be rocked, she had taken her pants off and wouldn't let us put them back on, she was just mad! We finally brought her into our bed, but she was still so angry that she wouldn't lie down and she kicked and screamed some more so we put her back in her bed. About half an hour later she was still screaming "mommy's room" so we tried it again and she finally fell asleep with us. I think it was like 3. Then she woke up at 6:15 this morning. She will NOT be getting a prize.

I am seriously wondering if I even care if she has a pacifier at night. Is it worth it? I feel horrible letting her scream like that and I can't get any rest until she's quiet. At least I won't be here tonight so Dan will have to deal with it. We are so exhausted we may skip church this morning. I can't imagine bringing Ava to the nursery! I hope she gets the hang of it soon. I seem to remember 3 days being the magic number for getting kids used to a change.

Friday, April 4, 2008

Warning: This is an entire post of complaining.

This morning Drew had his blood test. My plan was to get ready for the gym and take him right after the blood test because he likes playing there. So I didn't take a shower, I put on my gym clothes and loaded up the kids in the car. When we got to the lab I dropped off our medical ID card and sat down with Drew. I let him open the package my mom sent for him "for being sooo brave." He was all ready to go, in the right mind set, when the woman at the front desk tells me that there is no lab request in the computer. I tell her, it's the same as last week, we just need to check his calcium levels. Nope, nothing in the computer. Fine, I load the kids back up and go upstairs to the endocrinology clinic. I tell the receptionist what we need and since it's also the cardiology clinic I ask about the referral to Stanford. No record of a referral, but she'll leave a message for the cardiologist. Fantastic. They resubmit the lab request (even though she says she can see the original in there) and we go back down to the lab.

Drew did such a good job today! He was the best I've ever seen him. Instead of screaming from the second they touch him, he just said "ouch, ouch, ouch" during the stick. Then he calmed right down. I was so proud of him! The sticker book of diggers and dumpers that grandma sent really helped! Then it was back up to the pediatrician's office to see if they had record of the referral from the cardiologist. Nope. At least we have a month and a half to get this part figured out.

Then we had to stop at the pharmacy to pick up Drew's medication. As usual there was not a single parking space. So I parked wherever I wanted to figuring if I got a ticket it was worth it since there was seriously nowhere to park. I take the kids out and load them into the stroller and make my way into the pharmacy. And guess what? My medicine wasn't ready. AGAIN. The poor lady, I lost it a little. I was like, "the pharmacist said he was going to fill it yesterday so that it would be ready today when I got here." She says, "I'm sorry, it's going to be another 30 minutes." So I said, "This always happens! What can I do so that my medicine is going to be ready when you say it will?" She was very sweet and apologetic and said she would give me her name and personal phone number and I could call her before I come. So I apologized and said I knew it wasn't her fault, but it's so frustrating getting the kids in and out of the car and there's never any parking! So I said I'd come back in 30 minutes. As I'm walking back out to the car I thought I saw the parking people at my car giving me a ticket, and I just thought Great! That is awesome. But it wasn't them. Phew!

I move my car and see a parking space open up! I wasn't going to take any chances so I pulled right in and it luckily still had 30 minutes on the meter. Which was a good thing because all I had in my car was two pennies. I didn't even have a dollar to put in the change machine. So now I have to figure out what to do with my two frustrated, tired, and whiny children for half an hour. So we walked around the grass for a while and then went back in because I was going to ask the pharmacy lady for a quarter for the meter. If my medicine was ready when it was supposed to be I wouldn't need any more change! But by then the medicine was ready. Thank goodness, because the kids were tearing up the place running back and forth in front of the automatic sliding doors and some lady even said "excuse me!" to one of them to walk by and get to her window. Whatever lady. They were well behaved two hours ago when we started this wild journey.

By the time we get into the car it is 11:15 and I know if we go straight to the gym they will be starving before my workout is over so I give up on that idea. We did have a good yell session in the car which made us all feel better and we all ended up laughing. We drove by a park close to our house and wanting to be a fun, spontaneous mom I thought "let's stop at the park." So we did and I asked Drew when we were next to the bathrooms if he had to go. No. Then, not two minutes after we get to the playground I hear "I have to go potty!" I tried to take him behind a tree, but it was already too late and he had gone a little bit. ARGH! This is why I asked you three minutes ago if you had to go! Luckily I still carry a change of clothes so he got dry underwear and pants on and we finished our playtime at the park.

I hope the rest of the day goes a little more smoothly. And that I can get to the gym at some point today.

Wednesday, April 2, 2008

Updates

Pharmacy Update:
I summoned up the energy to call the pharmacy again on Monday to figure out what happened to our medicine. I spoke with the supervisor who called me back after about 45 minutes. He said it looked like they dispensed the proper amount from their records, but that he looked at our refill history and saw that we are typically very regular about when we request our refill so he is going to have a month's worth of medicine ready for pickup on Friday and he won't charge us our typical co-pay (which is $50 so that's almost even). He was very nice and even spoke with the insurance company who will only give us 22 days at a time and won't authorize a refill until the 22nd day. How does that make sense?! Apparently I need to call the cardiologist and ask him to get a new authorization if we want to have that changed. So I'll add that to my list of things to do.

Surgery Update:
Yesterday while I was at mom connection the coordinator from Stanford called me twice about authorizations and referrals. Last time we talked I left her a message with the phone number of the pediatrician so she could give them whatever information they need to make a referral through the insurance company. When we talked yesterday she was like, "I don't usually do this for families, but I'll do it this time." Uh, thanks for doing your job this time. So she called the pediatrician only to call me back and tell me that I need to call cardiology and have them send the info to the pediatrician before they can call Stanford who will THEN call the insurance company. I'm pretty sure she has the number of our cardiologist, but whatever. I called two different numbers yesterday, neither of which was the proper place to call, and eventually left a message for our cardiologist on his voice mail, hoping he knows what to do next.

Other News:
Not much, just doing our normal routine. We do have one more blood test on Friday to make sure Drew has outgrown his need for calcium (fingers crossed!) and then the developmental assessment has been scheduled for Monday with UCSF. I hope he does well! Oh, and I finally got my mother's ring for Ava. Two years late is better than never and it is beautiful! I'm wearing it stacked with Drew's ring on my right ring finger. Thank you Honey!