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Friday, April 29, 2011

Challenges

When you have a baby, the craziness never seems to end.  Last Monday, for example, I was clipping Coops' fingernails and his entire pinky fingernail came off!  Needless to say, I freaked out.  But after being reassured by several pediatricians that it would grow back, I felt a little better about it.  He didn't seem to mind and the skin underneath was pretty rough, which means he probably injured his nail bed at some point and so all it needed was a little tug to come off.  And then tonight, we were giving him a bath and for the first time in the 5 months we have been using Selsun Blue conditioner, he got some in his eyes.  They were really red and he was crying, so I called the Poison Control Center.  They told us to pour water in his eyes for 15 minutes, which is basically waterboarding him, and if they're not better in an hour to take him to the ER.  After about 20 minutes, he was smiling at us again.  Then he ate and went to bed.  Back to normal Cooper!

Monday, April 25, 2011

Ophthalmology

Today, Cooper had his second ophthalmology.  This time we met with a neuro-ophthalmologist who also performs surgeries.  Physically, Cooper's eyes are fine.  But his slow development causes him to focus really hard on things, especially those that are far away, since as an infant he is slightly far-sided.  So, as with many other things right now, we are waiting for him to develop.  We'll meet again in June.  IF his eyes have gotten worse or stayed the same, he'll get prescribed little, tiny glasses.  The glasses will make it easier to focus on things so his eyes won't have to work as hard.  After he wears those glasses for a few months and there is STILL no improvement, then he'll have to have surgery.  So, in that worse case scenario, hopefully his surgery can be scheduled for the same day as the urologic surgery.  One dose of anesthesia is much better.

Spoiled? Nah!

Cooper had a great Easter.  He got four Easter Baskets:  two from us, one from school, and one from our neighbors.  Here they are:




He also got a present from us and both sets of grandparents.  But spoiled?  I don't think so.  I prefer "loved"!


Friday, April 22, 2011

Big Meeting

Today was the big meeting at Cooper's school.  We got the results of all of his evaluations: developmental, speech, occupational, and physical.  Basically, it was pretty much what we already knew.  Developmentally, Cooper is about a 2-3 month old.  So he has a LOOOONG way to go.  BUT, even since his developmental evaluation in February, he has changed and grown.  So, like I have said many times before (it's kinda becoming my mantra), it IS happening!  Just slowly.  The good thing is that now that we have had this meeting, he can finally begin all his therapies.  He will have three 45 minute sessions of speech therapy, three 45 minute occupational therapy sessions, and three 60 minute physical therapy sessions every week.  Considering how much time he spends napping and eating, that's a lot of time!!

In other news, Cooper visited the Easter Bunny today after school.  He was really tired, so there wasn't much smiling, but at least there wasn't any screaming!  Love the ears and his Little Bo Peep outfit!  More on Easter later...

Wednesday, April 20, 2011

Good things

I'm beginning to think my blog is kinda a downer.  On Monday, I had to fill out a parent survey on Cooper for his school.  One of the things they asked was what were the good things happening with Cooper.  I wanted to list some.  He has amazing head control.   His trunk control gets better all the time.  He is SO cute!  He smiles at me.  He is slowly becoming social and is smiling at other people.  He is a very easy-going baby.  He is an amazing sleeper.  He is starting to be a good eater; when you bring a spoon to his mouth, he opens his mouth.  He is getting bigger and longer.  He is progressing and changing and developing.  It may be slow, but it is happening.  He laughs.  He hates to have his feet tickled.  He LOVES his giraffe lovey.  His eyes are gorgeous and his eye lashes are so long it makes every girl that sees them jealous.  He loves baths and doesn't mind getting water dumped on his head and face.  I love him so much!

And in other, more personal news: I am finished pumping!  My life is no longer ruled by the pump!  I don't have to schedule my entire life around it!  I feel free!!!

Monday, April 18, 2011

Juke Joint

On Saturday, my little family and some friends of ours went over to Clarksdale for the Juke Joint Festival.  My mom and I hung out in the morning and had lunch with my dad at Oxbow, a new lunch place there.  I had tuna tacos with a Siracha aoli.  Amazing!  That afternoon, Brad, Matt, and Sarah joined us and we all walked to downtown to look at the art booths and to buy wrist bands for the evening festivities.  With a $10 wristband, you can get into every bar in Clarksdale.  Sarah and I bought beautiful hand painted picture frames to put pictures of our boys in.  For dinner, we all went across the street to the Denton's house and ate shrimp and BBQ.  Then we went out!  My parents fed Cooper at 10 and babysat for us!  It was nice to have a night when I didn't have to be a mom.  Brad says he has almost forgotten what I'm like in non-mom mode.  But I'm fun!  I remember!

The next day, we went to Abe's for lunch.  You can't come to Clarksdale only once and not go to Abe's.  Then we fed Coops and headed home!  It was a nice little break.

Thursday, April 14, 2011

Other children

I do have a couple of other "children," Leffe and Sicily.  Sic is as happy and healthy as she can be.  A little clingy, but...  Leffe, like Cooper, has a thyroid issue and is on medication for it.  But because it was untreated for so long, she has a heart murmur now.  Of course.  When it rains, it pours, right?  So far, it's not too bad and the vet is just going to monitor it.  She has springtime allergies as well and is on Zyrtec.  But she LOVES medicine.  She knows the words and she gets so excited every morning and every night when she gets to take her medicines, because afterwards she gets a cookie.  Her favorite thing!

Good News

I found out yesterday that Cooper does not have to wear a helmet!  Yay!   Helmets have to be worn for 23 hours a day for four months to work; it was going to be awful!  But he doesn't.

Also, the inhalers are awesome!  I can't even hear him breathe anymore, and if you've ever been around him, that's saying a lot.  He is also eating a lot more now.  He's chowing down 4-5 ounces 5 times a day. Hopefully, he'll get fat to match his length.

Now that his health issues seem pretty much in control, I hope he can really start to catch up on the growth and development side of things.  We meet with his therapists and teachers at the end of next week, and then he'll start his therapies.  Hopefully, we'll start seeing a lot of improvement!!

Tuesday, April 12, 2011

Happy News!!

There are benefits to being a doctor's wife and one is that your pediatrician is an easy phone call away.  I called our pediatrician to tell her what was going on and she looked up his radiology report.  Cooper's skull bones are NOT fused together!  Yay!  That means he doesn't have to have surgery!  Most likely they will want him to wear a helmet for a few months to get his head shaped the right way, but that is a much better alternative to surgery!  Thank you for your prayers... they were answered!

Neurosurgery

Once, I would like to take Cooper to a doctor and they tell me that nothing is wrong.

Cooper went this morning to radiology and had three x-rays taken of his head, bringing his total number of x-rays taken into the twenties.  I'm really getting tired of this.  Then he went up to the neuroscience clinic and saw the head of neurosurgery.  Because of the way that Cooper's eyes are in his head, or something like that, Cooper may have Craniosynostosis, a condition where the plates in the head fuse too early.  So then we got sent back to radiology to have a head CT.  I was concerned about the radiation level, because a CT is basically 100 x-rays in one, but the neurosurgeon explained it was better to know for sure so that they could deal with the skull immediately and that he just couldn't tell from the x-rays whether the bones were fused or not.  Brad was able to leave the nursery and come with me for the CT scan, which was nice. But the tech wouldn't let him look at the scans since he was a dad and not a doctor.  We won't know anything until tomorrow.  So now we wait and I think too much and get stressed and scared. If the bones are fused, it would mean pretty immediate surgery, since they like to have it fixed before he is 8 months old, which is in 2 weeks.  My poor baby!  Please pray for him to be fine!!

Monday, April 11, 2011

Thanks

I want to give a quick thank you to everyone who has text, e-mailed, or called me about the blog.  It is wonderful to know so many people are reading, and that it is meaningful to so many people.  Keep your prayers and good thoughts coming!

Saturday, April 9, 2011

Pulmonary Adventures

On Thursday, Cooper had a pulmonary appointment.  We were told that it could take up to 3 hours, so be prepared to stay that long.  They weren't kidding!  Our appointment was for 9:30, but it was 10:15 before we even left the waiting room.  Then he had ANOTHER chest x-ray (these are gestting a little ridiculous).  Finally, he saw the doctor and she wanted him to be on 2 inhalers and do CPT's.  So then I had to see a respiratory therapist to learn how to do the CPT's (http://www.cincinnatichildrens.org/health/info/heart/treat/chest.htm).  So for the next week I do "bop-bops" on Cooper after his albuterol inhaler three times a day.  He also gets Flovent twice a day for the foreseeable future.  Flovent can cause thrush, so we have to do that inhaler right before he eats in the morning and the evening and make sure we wipe of his mouth after the inhaler.

Brad had the day off on Friday, so he got to go with me to drop off and pick up Cooper from school.  We had to get little man up a little earlier so we had enough time to do the bop-bops (they take 10 minutes), get him dressed, and still leave on time.  We also now have a will, which became obviously important to us after Coops was born.  We had to get it witnessed and notorized, so we went to a friend's office to do this as well, so it's official now!  Finally we went and got haircuts and I chopped mine off!  5 inches gone!  It was just getting too hot and humid to have the long hair.

Wednesday, April 6, 2011

So far this week...

On Monday, Cooper had an ultrasound of his thyroid (which apparently is in your neck) and an endocrine appointment. I was a little worried about the ultrasounds because Cooper couldn't move that much and they were going to be rubbling his body with a hard, plastic wand. But he is the best patient ever! I held his neck so that his head was all the way back while she was performing the ultrasound and we can him breaks every once in a while, but he didn't cry or fuss or anything. The tech was really surprised and said he was one of the best babies she had ever worked with! I think he thought it was funny because he smiled the whole time.

The afternoon appointment was a different story. One of his genetic issues MIGHT be with his growth. Plus he has had some abnormal thyroid tests, so the geneticist wanted him to be seen and followed by endocrine. They wanted to do another thyroid level test (his 4th or 5th since birth) and test his growth hormone. So far, I am not too worried about his length. He has grown 8.5 inches since birth and is actually on the chart (14% for a 6 month old, 5% for a 7 month old) for height. And his thyroid tests have been high, but not high enough for them to give him medicine, so this was more of a "we're going to keep an eye on Cooper, just so you know" kind of appointment. The blood draws were terrible, though! He screamed the whole time, bled really slowly, and they had to stick both arms to get enough blood! Ugh! They did give him his second flu shot there, so I didn't have to go to the other ACH clinic, which was nice.

Tuesday he started school. This was much harder for me than him. When I left him there yesterday morning, he was already smiling at everyone and having a good time. When I went to pick him up, he was sitting in a Bumpo watching lights and listening to music. I kneeled down in front of him and he looked at me for a second, then smiled really big. It was great to know he really recognizes me and is happy to see me! At school, he napped well, ate well, and really had no problem! So far so good with that!

Friday, April 1, 2011

Tuesday

Cooper is officially starting "school" on Tuesday. Considering this day was supposed to come when Cooper was 5 or 6, this is going to be a rough day for me. In my head, I know that this will be good for him. He is going to the Allen School, a developmental school for infants to pre-K children with developmental delays like Cooper, kids with cerebral palsy, Down syndrome, autism, etc. He has access to speech, physical, and occupational therapists plus many wonderful teachers. This is what my logical, reasonable brain is telling me.

However, the emotional part of my brain and heart is resisting this move. He is mine! I don't want him spending all day (8:30-3:30) five days a week away from me! I feel like I have somehow failed as a mother because I can't help him in the way that he needs. I've already cried several times and I know Tuesday it is all I am going to do.

With all of this going on, I have been thinking a lot about Cooper and why God chose to give him to us. He has definitely been a challenge and I admit that I am jealous of everyone with "normal" babies. I know that there is no perfect child, but Cooper comes with his own special set of difficulties. This month alone, we are going to an endocrinologist, a pulmonary doctor, a neurosurgeon, and an ophthalmologist. He also has two radiology appointments: one for his thyroid and one for his skull. And that is just April. Plus, as a seven month old, he is still not rolling over, reaching for things, sitting up, etc. Don't get me wrong, I LOVE him! And he is beautiful! And is FINALLY smiling at me and happy all the time, but it is just happening so slowly!

Sorry for the rant!