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Friday, December 30, 2011

Christmas!!

This year, we did something a little different.  We actually woke up at our house Christmas morning!  We went to church Christmas Eve, ate a yummy dinner, opened pajamas, put out Santa cookies, and watched "It's a Wonderful Life."  The next day, we got up with Coops, opened some presents and made homemade orange rolls and bacon for breakfast.  We packed up the car and headed to Clarksdale after Cooper ate at 10.  We only spent about 24 hours in Clarksdale, but it was great to see so many friends and family.  I think there were 21 people for dinner Christmas night at my Uncle Bill and Aunt Frannie's house.  The food was great and the company was even better.  Cooper is still the only baby, so he was definitely the center of attention while he was awake.  Next year, there will hopefully be at least 2 more babies around!!   Here are some random photos:

Cooper's Christmas Eve pajamas:


"Can I eat those cookies?"



"Oooh, pretty!"


Cooper about to open his Santa present:


In our Christmas pj's:



Uncle Bobo was there too!


Hanging with his Godfather:


Love the Godparents:



Mmmm... Sarah's coat is so yummy!


Starting to get sleepy, so put on the pajamas: 



Dad told me the cloth diapers make his butt look big:



Jessica Popper Hands


Jason and Sarah!


Drinking red wine out of straws?  Yes!


The boys:


And the girls:


Podge:


Wednesday, December 21, 2011

Santa Fail

We have taken Cooper to see Santa this year... twice.  He's at that age where he is shy around people he doesn't know and in places he doesn't know.  He makes this weird face by sucking his lips in.  So we weren't very successful.  The second time, we just bought the best one we could get (actually, we went with Cooper's grandparents, so THEY bought the best we could get; thanks Schneiders!!). 


So, here is the official one:



And here is why that really is the best one.

These are from the first trip:





And these are from the second trip:





Monday, December 19, 2011

Back in School

Cooper went back to school today.  Thank goodness it's a short week; I miss my little man!  My logical mind knows that this is good for Cooper and what he needs.  My emotional mind just needs to listen to that side of things a little more.  I think it was harder to take him this time than it was in April.  He just has such a big personality now!  He thinks things are funny (like when his alligator lovie "attacks" his face and neck), he gets mad at things, he reaches for toys and things that he likes, etc.  We read books together, do tummy time, bounce a lot, eat food, and just generally have been enjoying each other's company more and more every day.  And now he's back at school.  Ugh.

Friday, December 16, 2011

Surgery

Cooper's surgery was yesterday, and it went great!!  They were a little late getting started, so the whole thing took a little longer than expected, but other than that, everything went really well.  He got into the PACU, the surgery recovery area, at 3:30.  We got to see him, after talking to the surgeon, a little before 4.  He opened his eyes, saw us, smiled a little, then went right back to sleep until almost 5.  4-5 is his normal nap time, so I really think the not waking up for so long was just him napping.  We couldn't hold him like we normally can after surgeries, because they wanted him kept as flat as possible so as not to irritate the wound in his groin where the catheter was put in.  So that part stunk.  Once he was awake (we had to blow in his face lightly and tickle his knees to accomplish this), we got moved to a private room for the rest of our stay.  They wanted to observe him for 4 hours after surgery before we could leave.  At first,  his oxygen saturations were terrible.  Of course.  But by 6:30 or so, after we gave him breathing treatments and he got some food in him, it normalized enough that anesthesia was ok sending us home.  So at 7:30, we were out of there!!

This morning, he woke up and was his normal, happy self!  We can even send him back to school on Monday!

Wednesday, December 14, 2011

Surgery Details

Cooper's surgery is finally upon us.  I am so ready to have it behind us and him back in school and back to a regular routine!!  We have to be at the hospital at 9:20 tomorrow morning.  He has to stop eating at midnight.  We have to give him his medicine at 6:30 instead of 8.  His eye procedure is at 11:20.  His heart procedure is at 12:30.  They are in 2 different places, so I hope someone comes and gets us and lets us know when he is moving and where to go.  I'm sure that will happen, though.  It's going to be a long night tonight.  We have to get up at midnight to stop the feeding pump, get up at 6:30 to give him his medicine, then wake up at 7:30 for good, since that is when Cooper wakes up.  And he is not going to be a happy baby, because by the time we get to the hospital, he is going to be HUNGRY!!  Poor guy!

Oh, and for those that live in Little Rock, there is a toy drive at Children's on Friday, so bring a toy by, see us, and help out a child in need!!

Monday, December 12, 2011

Genetics Results

The results of our chromosonal array are in, and we are both completely normal!  So we can have more children the old fashioned way and there is almost no risk for another child with an abnormality!  They say almost no risk, because there can be random mutations (see Cooper).  Good news!  And right before the holidays!!

Friday, December 9, 2011

ER visit

Today, we had to take Coops to the ER.  It was a very short visit.  So short that we had checked out and were leaving when the hospital people were getting there to officially register us.  There are benefits of being a doctor's child.

Let me start at the beginning.  Last weekend, Brad was sick for four days straight.  A couple of days ago, Cooper started pooping like crazy; 6-7 dirty diapers a day.  We figured he had gotten whatever Brad had. This morning, he had was feeling really warm and was much more cranky and irritable than normal.  So I took his temperature and it was 101.8.  I gave him some Tylenol and figured he'd be ok after he had slept.  Then at about 10:30, he started doing this weird thing with his hand.  It only lasted a minute or so.  Enough time for me to try and stop it, and then when that didn't work to get a video of it.

Brad came home for lunch and to check on everything.  I showed him the video and he said that Cooper had had a focal seizure.  Not good.  So we called his neurologist.  She said that the fever had most likely lowered his threshold for seizures.  But we might want to take him to the ER just in case.

video
We got to he ER and were triaged be a nurse we've had before.  There was a 2 hour wait in the waiting room, so she opened up a room that was supposed to be closed for us and took us straight back.  Brad went to get our friend Michael who was working in the ER, and came back with Dr. Foster.  Dr. Foster is one of the attendings, and the doctor we see pretty much whenever we go to the ER.  He saw the video, double checked with the neurologist, and let us go home.  And that was it.  We were literally in and out in less than an hour.  We never saw a nurse or a resident.  And though I'm pretty sure Cooper doesn't feel great, I know that this is only temporary.  He'll feel better soon.

Thursday, December 8, 2011

Urology

Day three of three appointments in a row was the best.  All we did was reschedule his surgery for June 25, 2012 (this was the surgery he missed because he was admitted to the hospital the day before).  We have to wait 6 months after the cardiac procedure before he can have another operation, so the earliest we could have the surgery would be June 16 of next year.  June 25 is pretty soon after!  We'll see the doc 6 weeks before that to see if he needs more testosterone injections.  That was it.  No exam, no ridiculous waiting time.  We were in and out in 45 minutes.  Brad even made his lunch meeting!  Not too shabby!

Wednesday, December 7, 2011

Ophthalmology

Day two of three appointments in a row also went well.  Things are looking good in regards to Cooper's eyes.  He's tracking and seeing better, and there doesn't seem to be any negative effects from the seizure medication.  Next week when Cooper has his heart procedure, the doc wants to do an electroretinography (ERG).  This test measures how his retina is working.  He said he wouldn't give him anesthesia just for that procedure, but if he's going to be put under, might as well do it.  If something does go wrong with Cooper's eyes in the future, this test will act as a baseline.  And it will make sure that the Sabril is not affecting his retina.

Also, since the urology surgery will most likely be next summer, the eye doc said that the whole 2 surgeries in one thing might be back on.  We go back in three months, so we'll see then.  If he's going to have to have surgery, I'd rather do as many as possible at once.  Cooper is just so bad with anesthesia!!

Tuesday, December 6, 2011

Pulmonary

Cooper had a GREAT pulmonary visit today!  We are stopping one medication, taking less of a second, and after his surgery on the fifteenth, stopping another one!  Plus, instead of Cooper just tasting solid food, he now can actually eat solid food!  So that was all good.

Then, he got his second synagis shot.  Man, those things are horrible.  And, because he gets one a month for five months, he still has three more to go.  Brad was at the appointment this time, so I left for the shot.  I just couldn't take it.  But he was still crying when I came back in several minutes later.  And by crying, I mean screaming at the top of his lungs, red faced, eyes blood-shot, the whole deal.  But if it keeps him from getting RSV, we're just going to keep on.

Sunday, December 4, 2011

Sermon

This morning, I gave the sermon at my parent's church in Clarksdale, Mississippi.  Here it is:


Good morning.  I want to quickly explain why I am here.  A few months ago, Father Jason and Sarah were having dinner at my parents’ house.  Somewhere in the back of my mind has always been the idea that I could go to seminary.  Jason found out about this, probably from my dad, and said I should give the sermon Sunday.  This being a Friday night, I told him that he was crazy; there was no way I could give a sermon in 36 hours.  I thought that was the end of it until Jason called me a few days later.  He told me that he still wanted me to come speak, and that when the idea of going to seminary was floating around his head, someone had let him preach.  So we set a date, and here I am. 

My son, Cooper is fifteen months old.  He was born a month early, and at first, he looked a little funny.  So we had some genetic tests done on him and he has a chromosomal abnormality.  However, there isn’t much they could tell us beyond that.  He doesn’t have a defined syndrome, so the doctors don’t really know what to expect from Cooper.  By the time he was six months old, we knew things really weren’t right.  Our pediatrician thought we should look into putting him in a developmental day care.  We went and looked at a couple of places, and found The Allen School.  They performed some tests on him, which meant they asked us a bunch of questions and played with him, and determined that his developmental age was between 1 and 2 months.  So he started school and therapy in April.  And everything was great.  He received physical, occupational, and speech therapy 3 times a week, and he was working with the most amazing people.  Then at the end of May, we hit a big stumbling block.  He was diagnosed with infantile spasms.  Infantile spasms is a type of seizure disorder.  Most children that have it go on to have mental retardation, cerebral palsy, and epilepsy.  Essentially, this was the worst diagnosis he could’ve gotten.  It basically guaranteed that Cooper would never be “normal.”

For me, this diagnosis was the last straw.  This was when I finally got really angry.  I just could not figure out why God gave me Cooper.  And why 15-year-old girls still in high school get normal, healthy children.  I ranted and raved at God.  I yelled and called him terrible things.  And then I figured out a few things.  One, God has been called many, many things, but I don’t think “fair” has ever been one of them.  And maybe it’s not fair to my husband and I that we got Cooper, but maybe it’s fair that Cooper got us, and not a 15-year-old mother who had him while she was still in high school.  Cooper needs US.

Another thing I realized was that this was the most honest conversation I had ever had with God.  I have always believed in God, but I have never really needed God.  I took him for granted.  Sure, I prayed for a win before the big game, I prayed that I wouldn’t fall when I was walking down the aisle on my wedding day, I prayed that I wouldn’t be late on the first day at work, etc.  But those were shallow prayers.  They were meant more for me than for him.  But now, we were really talking.  And I felt that I was getting things in return.  Somehow, He pointed out that Cooper needed me.  He made me realize that I could deal with having a child like Cooper.  While I was the most angry with Him I have ever been, I realized just how much I needed Him.

And almost just like that, I got over it.  I told myself to would love Cooper for Cooper.  I would stop comparing him to other children, I would stop stressing when he didn’t meet milestones, and I would just love him for him.  I’m so proud when he does meet a milestone, no matter when that happens.  I have learned to be at peace with him.  In 1 Samuel, it says, “The Lord does not look at the things man looks at.  Man looks at the outward appearance, but the Lord looks at the heart.”  I try every day to see me as God must see me.  He must see me as strong, loyal, and fierce or he would not have given me Cooper.  When things are bad, when Cooper spends 3 weeks in the hospital, stops eating and has to have a tube put into his stomach, or develops a milk allergy of all things, I take a minute to look in the mirror and try to see me as God does.  Somehow, it makes me able to face the next challenge God throws at me.

The holiday season is now in full swing.  For the first time in my life, I find myself thinking more about Mary than about her Son.  She knew, from the beginning, that her son would be different, that He would be an outcast.  But she agreed to love Him, to support Him, and to treat Him like a normal boy.  And in order for Jesus to become Jesus, that is exactly what He needed.  He needed a mom who loved and supported Him, who taught Him that to be Himself is ok.  If He hadn’t had that, would He have found the human race worth saving?  I find it unfortunate that the Christmas story is all about Jesus.  I wish I knew more about Mary.  I hope that she had someone to talk to.  I am fortunate in that way.  I recently read an article in the New York Times called “Notes from a Dragon Mom.”  Her son has Tay-Sachs disease.  He will develop normally for a while and then he will regress until he dies, usually by the age of three or four.  Her parenting is not “future-driven,” she allows her son to eat and do pretty much whatever he wants.  And why not?  But the thing that stuck out to me was this sentence: “Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground.”  Cooper has both of these issues, but unlike the dragon mom, and perhaps Mary, my husband is a pediatrician, so I do have people to talk to.  Pretty much everyone we know in Little Rock is a doctor, married to a doctor, or dating a doctor.  To them, discussing Cooper is just what they do everyday.  They don’t think he’s strange; they just think he’s cute.  I also have an amazing Bible study composed of women who are also moms to children with special needs.  The day I met them was amazing.  We speak the same vocabulary and sometimes that is all that matters.  The teachers and therapists at Cooper’s school have also been wonderful.  His physical therapist even calls Cooper her third grandchild.  I am so lucky that we ended up here with these people.  I don’t know what I would do without them.

It’s when I go to real parties that things get uncomfortable.  Here is how conversations go:  “Oh, you have a son?  How old?” “15 months.”  “Oh, he must be in to everything, running around.  How many words is he saying?”  “No, he has a developmental delay.  He acts like a six month old, just rolling over, almost sitting up.”  And then there’s an awkward silence and the subject is changed.  No one wants to talk about a child like Cooper.  As the dragon mom says, “Parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what [parents of ill children] see. The long truth about their children, about themselves: that none of it is forever.” “Parenting,” she goes on to say,” is about loving [your] child today. Now. In fact, for any parent, anywhere, that’s all there is.”  Mary realized this.  She must have, or she would not have been chosen.  She raised her child in love, not to make her child, and therefore herself, look good.  She had to parent without thinking of the future.  She had to act on pure love.  And I hope that this is what gave Jesus His humanity.  This holiday season, remember that.  Remember to love your children for the now.  Take time, create memories.  This time of year is when that sentiment should have to most meaning.  I love Cooper for Cooper every day. 

And in good news, he has been seizure free for several months now.  He is continuing to develop at his own pace.  He is getting stronger every day and his personality is getting bigger and bigger as well.  Please keep Cooper, and his family, in your thoughts and prayers.

Let us pray.
O God of all seasons and senses, grant us the sense of your timing to submit gracefully and rejoice quietly in the turn of the seasons.
In this season of short days and long nights,
of grey and white and cold,
teach us the lessons of endings;
children growing, friends leaving, loved ones dying,
grieving over,
grudges over,
blaming over,
excuses over.

O God, grant us a sense of your timing.
In this season of short days and long nights,
of grey and white and cold,
teach us the lessons of beginnings;
that such waitings and endings may be the starting place,
a planting of seeds which bring to birth what is ready to be born—
something right and just and different,
a new song, a deeper relationship, a fuller love—
in the fullness of your time.

O God, grant us the sense of your timing.  Amen.

Friday, December 2, 2011

Johnny Jump Up

Cooper has discovered the Johnny Jump Up.  The first time I put him in it, he didn't know what to do.  He just hung there.  The second time, he just stood in it.  But now, he's got it down.  And he loves it.

video
video

Monday, November 28, 2011

Being upside down is hilarious!!

video
Cooper thinks this is the funniest thing in the whole world.  He does this every time!  P.S.  Sorry it's sideways!!

GI

This weekend, Brad was on nights and there was a party to celebrate Madeline and Greg's wedding in Clarksdale, so I went to Clarksdale (sorry Brad).  The party was really fun, and I had a very relaxing weekend.

Today, instead of driving home, I drove to Children's for Cooper's GI appointment.  The appointment was for 2:15.  I got there about 1:40.  We saw the doctor at 3:45.  Ugh.  But, basically the doctor seems to think it really is a milk allergy, since everything is going so well on the new formula.  He wants us to just keep doing what we're doing.  Great.  The GI clinic is in the same building as the pharmacy, so while we were waiting around, I refilled one of Cooper's prescriptions.  It is also in the same building as the surgery clinic, so I ran by there to tell them that Cooper's g-button is looking funky.  They took a look at it and want us to use a steroid cream 4 times a day for 2 weeks.  Hopefully, this will get rid of the extra tissue that is growing around there.  If not, they have to burn it off with silver nitrate.  Pray that won't happen.

Wednesday, November 23, 2011

Good News and Pudding

Good news!  We got the results of the CT scan, and everything is normal!!!  He is just getting a big head.  That is SUCH a relief!!  The upcoming heart procedure is making me nervous enough.  I couldn't imagine the stress of a brain surgery!

And how I ever mentioned how much Cooper likes pudding?


"Get in my mouth!"


"Man, I'm DIRTY!!"


"Hey, Dad, is there more?"


"Yum!"

A little nervous

Yesterday, we went to the neurosurgeon.  As I mentioned earlier, Cooper's head was a little big, but I didn't mention how big.  His head circumference is in the 75th percentile.  This is exactly what we didn't want to happen.  So the neurosurgeon recommended getting a CT scan to make sure that this is just normal growth and not due to some other cause.  He had his CT scan at 10 this morning.  The neurosurgeon told us that we would get the results by the end of the day (I did not want to spend the holiday worrying about this, so that's good), and I guess we'll go from there.

Also, when we left the hospital last time, we were supposed to schedule a post-hospitalization follow-up visit with GI.  Brad called to do this, but when we got our appointment date it was for May.  That seemed a little ridiculous.  So Dr. Becton called Dr. Gibbons (the GI doc that did Cooper's scope procedure) and asked him about it.  His nurse called yesterday afternoon and now Cooper has an appointment to see Dr. Gibbons on Monday.  I'm pretty sure we're going to go in, tell them he's not throwing up anymore, and be done with it, but at least that's all happening now... and not in May.

Monday, November 21, 2011

Cooper... and our kitchen flooded

Yep, that's right.  It rained so hard last night that water got into our kitchen (between the foundation and the house; that can't be good) and we had about an 1/8 of an inch of water in there this morning.  Made for an interesting start to the day, to say the least.

Cooper had his 15 month checkup today.  He got 2 shots- his Hep A vaccine and his TDAP.  So that part was no fun, but there is good news!  He has gained so much weight that he is into the 20th percentile!  Go Cooper!  I guess not throwing up his food several times a day is really helping him catch up!  Height-wise, he's still way down in the fifth (which I guess explains why he is still in 9 month pants).  His head circumference is a little bigger than maybe it should be, but he has a nuerosurgery appointment tomorrow, and we'll see what they have to say about it.

Also, we're switching to cloth diapers.  Cooper is not going to be potty training for many years, and this will save us about $2,000 in the long run.  It's going to be about a $350 down payment (diapers, diaper pail liners, a different diaper pail, a trash can, extra inserts, etc.) but I think it will be worth it even in 6 months or so.  We decided to go with bum genius diapers after we got some good reviews about them from a couple of our friends.  We are getting 6 of the one size 4.0 with velcro pulls and 6 of the elemental all-in-ones.  I liked those 2 kinds equally.  We will also have 2 one size 4.0 with the snaps, but for some reason those don't fit Cooper as well, so we're not getting any more.  He seems to like them, they are comparably absorbent, and they will last for as long as it takes for us to get Cooper potty trained.  Plus, they're cute and colorful (even if Brad thinks some of the colors are "girly").  Kinda wish we had just done this from the beginning.  Ah well, at some point in the distant future, I'm sure we'll have another...


Friday, November 18, 2011

Big Things

Monday, Brad and I got to see the Bells and meet Hollin!  It was so great to see Sarah, Matt, and Zane, but I was most excited to meet their newest little bundle.  And boy is she a cutey!  I just want to eat her little cheeks up!  Zane hasn't forgotten me.  He wanted to sit "right next to Crady" on the couch.  Love that little guy and miss them all so much!!


Baby Hollin!!  Love her!


Brad, Matt, and Zane all wore plaid!


And Cooper wants to know why he was left out.


Wednesday, Cooper and I both had appointments.  Cooper got a new button!  It was much needed!  His original button was leaking and really loose.  We found out that the balloon holding it in place only had about half as much water in it as it was supposed to have.  So yay to the new button!

Brad and I had our blood drawn for the genetic tests.  So it's really happening.  And it's pretty much all I think about now.  There are so many "What if's" and I'm pretty sure I've thought of them all.  I don't know how long it will take.  We're just waiting.

Tuesday, November 15, 2011

A weekend away

This weekend, Brad and I went to my sister's wedding in New Orleans... without Cooper.  It was a little traumatizing, but probably more for me than for Cooper.  He had a great time with our good friends Sarah and Jason.  He went to lunch, did exercise, tasted some yummy food, and was just generally happy the whole time.  Thank God for cell phones.  They sent me tons of pictures and even a video!  Sarah and Jason got a lot of parenting practice in, but I'm pretty sure they're naturals!

Madeline's wedding was great.  Seriously, when it comes to weddings my family is 2 for 2.  The Bobo's sure know how to get married!!  As soon as she gets back from her honeymoon with my camera, I'll post some pictures.  I rode down with my brother and his girlfriend.  We stayed in Jackson with Kara and Ryan.  I love getting to see them, and even though we only spent an hour or two together, I left feeling renewed in our friendship.  Plus, their dogs love me!


I think Cooper has a new friend and Sarah has a new love!


Getting tickled!!


Nah-nah!


Jason, I think Cooper loves you too!!


Oh yeah!


Mmmm... Italian food!


Hanging in the stander


But now a little sleepy.


Precious angel!!  I missed him so!

Tuesday, November 8, 2011

Genetics News

As I'm sure you recall from my previous post (http://cradysboy.blogspot.com/2011/08/genetics.html), we are getting genetic tests done to determine if we are high risk or low risk of having another child with a genetic abnormality.  We were told we'd get the big run-around from the insurance company, that it would take several appeals, and that it generally was going to be a huge pain-in-the butt.  However, we have been approved!  The first time!  So, before the end of this year (really in the next couple of weeks or so), we are going to go in for blood work and have it sent off to the lab.  We'll know soon after what the results are.  I have to admit, I'm a little nervous.  If we are at risk, there are going to be some serious discussions happening.  And we would immediately go into money saving mode; adoption and in vitro are expensive!

In other news, Cooper has proved to me that he CAN roll over from his back to his front.  He did it a couple of times when his diaper rash was at its worst.  Now I just have to try and figure out how to get him to do it more often.  Suggestions?  Also, I think his rash is slowly getting better.  If nothing else, it is definitely not hurting him as much.


He wouldn't look at me and laugh.  He would only do one or the other.  So here's the best I could get.

Sunday, November 6, 2011

Diaper Rash

Cooper has the WORST diaper rash.  It started yesterday morning when he pooped out of his diaper.  He had a couple of red patches.  I put diaper rash cream on it and expected it to get better like those things normally do.  It didn't.  It just got worse.  And worse.  Until this morning it was bleeding.

This all started when Cooper was prescribed 2 antibiotics that both can cause diarrhea.  Apparently, diarrhea is like acid on a baby's bottom.  So here is what we're doing for him.  We gave him a bath with Aveeno Oatmeal Bath.  It just soothes his skin.  Once it has been patted dry, we put neosporin, hydrocortisone, and Bag Balm on it.  The first two treat his skin.  Bag Balm is from 1899.

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Originally, it was used for chapped cow udders.  It has zinc oxide, sulfate, petroleum jelly, and lanolin.  Great stuff.  We cake that on.  It creates a barrier so when he poops again, it doesn't hurt his skin more.  We are going to be doing a lot of this in the next couple of days.  Last, we are giving him tylenol with codine every 6 hours.  Otherwise, he just cries and cries and arches his back.  It's so sad.