CAH

Dr. Lewis called today with the results of Cooper’s test. It came back that he does have CAH. When they tested him with the chemicals that would stimulate the adrenal glands, his body did not make the Cortisol that it should have, but rather made more testosterone – indicating that he does have CAH. We will now be running tests to see how the Cortisone that we have been giving him is working, and begin the process of regulating the amount of medication he will need to take. Dr. Lewis will also be checking once more for the salt wasting hormones to check that he continues to process that part of his body correctly. We will return to Riley to meet with her on May 28 to learn the specifics of his treatments. In the event of an emergency when he could not keep the Cortisone down, we would have to give him an injection – which they will be teaching us about at that appointment.

I thank God for all of the incredible things that He has done for us. I can stay home every day with my 2 amazing and beautiful children! I am grateful that this is a treatable illness with simple daily medication, that this is the most common form of CAH, that he is a boy, that we have him (praise the Lord!!!!!), and that with the medication he will live a "normal" life. (As normal as any child of ours could be.) He can play any sport he wants – something non contact would make me feel better, while his dad keeps on talking about the Colts! God is sooooo good!

Thanks to an anonymous comment on my previous blog about Cooper, we found a great web sight/organization that has lots of information about CAH if you are interested in learning more. http://www.caresfoundation.org/ I’m sure it won’t be long before I am an expert on it!

Thank you, again, for your continuing prayers. I’m sure before I know it, he will be climbing all over and finally be able to defend himself from Grace! ~shelby

Tummy Time!

One Month and Still No News

Cooper is now one month old and Grace is 19 months old! We had our Well Baby check ups (at the same time!) last Monday and both kids are doing great! Monica was home for the weekend, so she and Mom helped me at the doctor's office. That's right- it really did take three adults to take two children for their checkups!

Grace continues to be off the charts for height. Dr. Keller said she is the size of an average 2 1/2 - 3 year old! That explains why many of the 2T clothes already don't fit! She also got a new pair of shoes - size 8! He also asked if she is saying at least 20 words... Uh... yeah, and then some! She certainly repeats anything she hears; and then remembers it. For example, they heard a wood pecker in the woods last week, and Tim told her what it was, which she repeated... but just the last half!! You can imagine!! Also she has started saying sentences. One of her firsts was "I got it!" But the one I'll probably remember as her first was, "Mommy, MOVE!" - to get me off the couch! She also pulled the, "NOOO, Cooper go night-night!" this week (with tears) when she wanted me to leave him in his bed! Just about broke my heart! I'm definitely seeing more acting out, but at the end of the day Tim and I just marvel at how great of a kid she is!!

Cooper weighed in at 9 1/2 pounds and is 23 1/4 inches long. He too has outgrown his 0-3 month clothes. I'm looking forward to warm weather when he can live in onesies! He continues to act as if nothing is wrong, for which I am very grateful. I am trying to get him to sleep a little longer at night, but so far, he wants to eat every 2 1/2 hours - which is shorter rather than longer sleep! But, as long as he is growing, I won't complain too much... yet. He has also started to smile at us! It is beautiful!

As for his test results, as of Friday, April 25, the Doctor had not yet heard anything. So, we wait. To see him growing and smiling has really been enough to distract me from the possibilities of lifetime illness. I have taken great comfort in the fact that he doesn't seem "sick", that so many people are praying for us - Thank you very much-, and that our doctor seems optimistic.

As soon as we hear results I'll update the blog. Thank you again for caring for our family! We love you all! ~Shelby

A sign of things to come...?

I think Grace is ready for Cooper to play with her!

Good thing we are working on how to wait for things!

Cooper's Update

So, I think that the actual purpose of a blog is to journal your thoughts or opinions about anything you want, but I have really just enjoyed sharing photos on our blog! But, today, I have no new pictures to share, just information about Cooper – who, by the way, is one month old now! What a great and crazy first month it has been! Some of you may not know the craziness so I’ll start at the beginning…
Newborns in Indiana are screened for about 50 genetic disorders. One of the screenings for Cooper came back borderline and led to a new test. So we did, and again the results were borderline. So, a blood draw was requested by our pediatrician, who was in contact with the endocrine doctors at Riley. But, again, the test was inconclusive! Still not knowing what we were looking for was a bit frustrating for the parents, as you can imagine! So, we had another blood test and sent it off to a lab in California.
To shorten this, we eventually got the results back only to find that the actual hormone (testosterone) levels they were testing (which they thought would come back half as much as originally tested) came back 3 times higher than before. So, we were off to Riley for one more definitive test that will tell us if he has Congenital Adrenal Hyperplasia. (CAH)
I can try to explain what this is, as I have tried to get Tim and the Doctor to simplify it as much as possible so I can understand it!
Cooper’s pituitary gland sends messages to the adrenal glands to make salt hormones, cortisol hormones, and testosterone hormones. But for Cooper, somewhere along the way the enzymes from the adrenal glands are not making cortisol, and instead those enzymes are making testosterone. Hence, the elevated levels of testosterone and the deficiency in cortisol. If this disorder goes untreated he could go through puberty as early as 2 or 3 years of age because of the testosterone. Also, without the cortisol, he will have trouble fighting infections. So, the treatment for this is cortisol hormone replacement therapy. He would have to take cortisone, daily, for the rest of his life. At times of stress (illness) he would need triple the doses.
SO! Finally getting some answers to our questions and knowing what we are dealing with is a huge relief. The doctor at Riley was very nice and spent about 2 hours with us answering our questions. We now are waiting for the blood results, which could take a week. Then we will go back, if he has CAH, in a month to learn more about the treatment.
Thank you for all the thoughts and prayers. In spite of it all, we are all doing very well. Cooper weighed 9 pounds 6 ounces today, so he is eating well!! Grace is showing more and more frustrations with me as I can’t be at her beckon-call, but I have faith that she’ll get better at it!
I’ll let you know when we know! ~shelby

Picture Mission

I'm on a mission to take as many pictures of Cooper as I did of Grace so as not fall victim to "the second child" accusations. (Monica!) So far I think I'm doing pretty well!

Spring is here!!!

Grace loves to hold Cooper.

"Hi Buddy" she now says to him.

Two and a half weeks

Things are going well here with 4 Drakes in the house. Tim has been home for spring break which has been a huge help! Family and friends have taken good care of us with meals and boy clothing for Cooper. Grace will certainly miss all the attention when things die down! We're all just taking our time adjusting to each other and loving almost every minute of it! (Maybe not so much the 3 am feedings, but... :) )

Getting to know you...

Grace is getting much more brave with Cooper. She no longer is scared when he cries, but tries to comfort him with his pacifier, blanket, or the nearest book or toy! We still are in "protective" mode when she is around him, but she is getting better.

Uncle Ben and Aunt Laura stopped by to meet Cooper.

Grace brought us flowers at the hospital to thank us for her new little brother. Here she is signing "flower".

We're still a little jaundice, so we take sun baths whenever the sun is out.

(Just like his dad, he can't do more than 5 minutes in the sun before he is bored!)

Cooper and Moot, 1 week.

Our first bath.

Big eyes!

One of our favorite gifts - the "Pee-pee Teepee for the sprinkling wee-wee!"

(set of 5!)

Time with Mom and Dad

Introducing Cooper Harold Drake

Cooper arrived at 12:03 pm, on St. Patrick's Day. Talk about a festive beginning- this boy is sure to be fun! He was over 22 inches long (I watched as the nurse wrestled with him and finally gave-up and called it 22 inches...I would unbiasedly add at least another half-an-inch) and 9lbs 3oz. Shelby is fine (considering), but since she is a little unsettled these days, I'm going to put together a little pictoral diary for those of you who could not be there because you actually work for a living, live in another state, or vacation in another country!

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My uncle Bill, his wife Rhonda, and my cousin Laranda are shown here doting on the smooth skin on his feet. I think we all know who he gets that from
...and it isn't Shelby!

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My cousin Rodney showed lots of love and came down to see Coop'!

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Shelby's close friends stopped by (...that's Mandi, Christine, and Mary)

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Here is Grandpa Tim with his second grandchild and first grandson. Notice the green for St. Patrick's day and Snoopy- Tim's trademark- on his shirt! Tim helped take care of Grandma Patty (he is defnintely earning his eternal crown the hard way) and Grace while we were delivering Cooper, and the 4 Drakes are indebted for his help. ____________________________________________

Grandma Margaret almost cried, okay...she did cry, while holding her grandson. She said he smiled at her just hours after the birth.

(We all know it was the passing of a gas bubble.)

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Grace is growing fonder of her new little brother. At first his crying was pretty scary, but now she is constantly bringing him toys and books to help calm him. Granted, she hasn't perfected the art of "handing" so her attempts to help turn into mom's attempts of deflection and protection. But, when he went down for his afternoon nap, she freaked out because he wasn't in the living room where we were playing. I think she's quickly developing a big sister attitude!

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Grandma Patty has been a gift from heaven. And anyone who knows the relationship I have with my mother-in-law knows that she would have to be pretty impressive to have me say that about her on the world wide web! She helped transport and babysit and cook and clean and bring cool flowers and everything in between. In fact, she helped from the very beginning of delivery-we called her at 4 am Monday morning telling her that Shelby's water broke. She came over and watched Grace and has basically been there through this whole ordeal!

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He is very healthy- with strong lungs and vocal cords!

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The grandmas and Grace almost ignored the nurse's request to wait until he had his first bath.

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Here he is a few hours after birth with a swollen face from the quick trip down the birth canal. While Shelby may disagree, I think Cooper slid out of that canal as quick as a Michael Jordan first step!

So, there you have it. Everyone is healthy, home, and sleepy. It has been a great couple of days and God has certainly blessed.