Wednesday, December 5, 2007

The best laid plans...

What a long day we have had! Everyone in the Himmelberger household is exhausted!

So, today was Drew's big appointment with the craniofacial team at UCD. And I wasn't looking forward to it. I knew it would be long, I didn't think Drew would cooperate and I thought they would have unpleasant news for us. But I made a little plan and figured out a way for me to be ok with it. The plan was that Dan would come with me both for moral support and so I didn't have to bear the total responsibility for answering the questions of a dozen doctors and reciting a medical history that can be mind-boggling. A friend of mine was going to watch Ava so that we could both go to the appointment. I got myself all ready last night. I loaded the diaper bag, set out everyone's clothes, packed toys and snacks to occupy Drew, even got the coffee maker all ready to go. We set the alarm and everything was going according to plan, when Dan interrupted my shower with this news: "Ava just threw up." What? That was NOT part of the plan. And then she threw up again. And pretty much the rest of the day. So obviously all my plans went out the window. I have to say I was pretty discouraged this morning, almost to the point of tears. I really didn't want to go at all and I especially didn't want to go by myself.

But, for a day that started out pretty crappy, it turned out pretty good. My son is amazing. We sat in the same room for 4 and a half hours and saw 12 doctors. He was so good! I almost cried watching him. I told him I was so proud of him for being so patient, for listening to the doctors, for being able to calm himself down, and just being so darn cute and sweet for so long in such difficult circumstances. Seriously, what three-year old can sit in a room for that long and not have a total melt-down?

I was expecting less than good news from the doctors, but they all seemed to be impressed with how well he was doing. At one point Drew had to have his ear canals cleaned with this metal instrument, while sitting in a chair kind of like a dental chair, and had to hold really still. He let them do the first ear, but wasn't ready to let them do the second ear. One of the doctors said if he couldn't hold still she'd have to wrap him (like swaddling), and I knew he wouldn't like that. So I told him, you have to hold still and if you can't they are going to wrap you like a baby. Can you hold still? And he said "yes mommy." Then my sweet, sweet boy started taking deep, cleansing breaths and he held perfectly still the rest of the time! I was so proud of him, being able to soothe himself and do what he had to do. And the doctors were so impressed! I even heard them talking in the hallway about how he did better than the five-year olds they see and how cute he was with his deep breaths.

Three hours into the appointment he had a hearing test, where he had to sit in this tiny room with headphones on and listen for more than half an hour. Every time he heard a beep he was suppose to pick up a toy and put it in a bucket. And I sat there watching him, thinking what kid does this? He is sitting here, following the directions of a stranger, not playing with the toys they way he would want to, not throwing the toys off the table because he is done with these people, but quietly listening for beeps. Every once in a while the audiologist would remind him to wait until he heard the sound to put the toy in and he would look at me and say "I have to listen."

So the basic news is his hearing is fine, his speech is fine, his palate is fine, his teeth are fine, his head shape is fine. The geneticist was impressed that Drew can recognize all his letters (she didn't even know he knows the sounds they all make too) and she did recommend we get an x-ray of his cervical spine. We'll see the panel again in another year or two, and we may see the speech pathologist for another evaluation in about six months.

On the way home I told Drew that he did such a good job that we could do whatever he wanted the rest of the day. We could go to the park with his friends, watch movies, bake cookies, go to the toy store...He picked toy store. We were about half way there when I looked back and he was asleep in his carseat! He must have been exhausted! So I took him home and let him sleep for a few hours. Then I woke him up and said let's go to the toy store! He picked a Mickey Mouse Christmas video to bring home and spent a lot of time looking at dinosaurs, cars & books.

Not only do I have the best son, I have the best husband. He took care of Ava all day while she either slept on him or puked on him and didn't complain about it at all! He is such a good daddy. Poor Ava could barely keep any water down and by the time she went to bed tonight the only thing she had eaten all day was a banana. Needless to say I have been trying to keep her and Drew apart since we don't want him getting sick before his cath next week. I bought some clorox anywhere spray and have cleaned all the toys Ava likes, all the toys Drew likes, the tables, the chairs, the remotes, etc. I also had Dan mop the floor with bleach to kill any germs that might be lurking. We may still all end up puking, but it won't be for lack of trying.


Anonymous said...

I had been waiting and hoping that today went well for you and Drew. I could feel your relief and I am so amazed at how good Drew did for that long at the doctors. I am so glad that you didn't have any bad news and I will await next week and hope that it goes as good as today!
Lindsay Sells

Michael said...

well written day in the life post.
we have been through this whole day gauntlet as well.
But really, sometimes it feels like everyday is like this.
I think this is a great way to help people understand the challenges of a CHD/DiGeorge. Plus, this is representative of how great these kids adapt and handle the challenges put before them. Thanks for sharing.

Isabelle's Mommy said...

You are such a great Mommy! I am so proud of you!


Molly said...

You and Dan are amazing parents. You work together and lean on one another as a team. Your children should be extremely thankful for the fabulous care and love that you pour down on them! You're doing a great job! I want to be a good Mommy like you when I grow up!

Lexi said...

Man oh man! I LOVE reading your blog! You are such an inspiration! The two of you as parents and your whole family! What a great thing it is to have you as part of our church and as a friend! May God bless you richly today!!!! Let us know how Ava is doing and I pray that Drew doesn't catch what she has!

Anne Marie said...

My goodness- I don't even know where to start. Drew IS AWESOME. What a big, patient and extremely adorable boy. Reading about his day makes me miss him so much and want to see you guys soon! And the long days of kids puking all over you are absolutely unbearable, my thoughts are with all of you. I really hope all the disinfecting works! Poor Ava- throwing up so much is no fun, give her our love.

Amber said...

I'm so glad that your day went so well. We, as mommys, try to plan as best we can. Then somewhere along the way, we realize we aren't the ones "in charge" and I for one am so thankful for that! Looks like God had "other plans" for you today! It's amazing how He works in our children when they have to endure so much. What a blessing Drew is and thank you for sharing glimps of him with us...what an inspiration!

Kacie said...

what an amazing little boy - and an amazing mommy and daddy.