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Tuesday, April 13, 2010
Monday, April 12, 2010
Jac
Jacie has such a gorgeous smile. His smile is getting more and more expressive. When he smiles at me now I can "feel!" it!
Happy 18 month birthday Nicie
(Note: This post is more than a week and a half late! With the sickness we have had and Nicie not sleeping well my late night blogging has been curtailed! It is now 6 am!)
Our little Nicnie is 18 months old! 1.5 years! OMG! My boys are growing up so fast!
Nicie's language development is really making quick progress now. He now says "thanks" and "thank you." It is the cutest thing when Jac and Nic are saying, "thanks," back and forth to each other as they are trading a bottle back and forth while in their car seats!
Nic's first real two words phrases started in San Diego a few weeks ago. I think the first one was "buy it" while we were in the Borders book store in San Diego! Oh man! He followed that with a lot of other two word "it" phrases - including "have it." Oh man! This week he added, "thank you!" I am not sure if he realized that the "it" phrases were two separate words but I am more confident that he knows that "thank you" is two separate words, because he uses "thanks" and "thank you" at different time. He says "thanks" so nicely it is really sweet!
He is also calling Grandma, "Nama," which is just too sweet for words. He says "Nama" all of the time! He doesn't have "Grandfather," down just yet but I am sure that will come soon.
He loves dogs! He gets so excited when he sees one in person or on TV. We have been giving him a nightly nebulizer treatment for the last several weeks (more about that later) and we have been showing him "puppy" videos on YouTube on the TV while we do it, and they are remarkably good at distracting him so he will at least sort of sit still and leave the mask on.
Nicie has been diagnosed with Reactive Airway Disease (RAD) by Dr. P, his pediatrician. Basically, this means that when he gets an upper respiratory infection he tends to get bronchialitis, or inflammation in his bronchia, which means that he wheezes when he breathes. This may or may not mean that he will have asthma when he is older, but for the time being it means that when he gets wheezy we need to give him a bronchodilator in a nebulizer several times a day. Fun! Oh man! He was so mad the first few times we did it. He screamed and yelled. I did not believe the doctor and nurse when they said he we would get used it! He did! He actually climbs up on my lap and lets me do it now! The puppy videos help! We have to do it for five minutes at a time which he still doesn't like but the first minute or two are now pretty painless.
He is moving with a lot of confidence now. He is going up and down stairs more easily, especially down stairs. He can up a few stairs without hands and he can go down a few without hands also. He is running everywhere - and yelling "run", while he does it!
A few things in his behavior have gotten worse though. He really likes to throw, which is great, except that he throws all sorts of things, and he throws them when he is upset. Just as an example, tonight he had a metal sippy cup and he asked me to put more drink in it. I put some water in it and he got upset, he wanted to take the top off of it, but I wouldn't (because he spills open cups all over everything). When I wouldn't do it he cried and fussed and then threw the sippy cup at the bed. A lot of times he will throw the offending object at me, or someone else. Bad. He also likes to throw his food, especially when he is done eating or doesn't like something. I think we are about to have to go to a zero-tolerance policy on the throwing because more gentle approaches have not worked and it is getting dangerous as he is strong and a good thrower.
The cute thing about the throwing or other undesirable behaviors directed at me or Daddy is that after he does something that hurts you, he gives you a kiss. Augh!
He also very sweetly kisses and hugs Jac when Jac gets hurt (through Jac's own doing). Tonight, Jac hit his head hard on the couch, and I took him into the bed to soothe him. Nic followed, and gave him hugs and kisses to help!
He CAN be a true love bug. He gives great hugs! Wrap around the neck and hold on tight hugs!
He loves to nurse! He calls it "Boo Boo Eh"! He doesn't nurse nearly as much as he used to, but for naps and sleep he always nurses (through the night) and when he first wakes up.
He laughs, a lot! He has a very infectious laugh, and when he gets going we all go with him.
He has a really expressive face. You can tell what he is thinking (sort of!) from his face, it is all there.
He loves to run head long into things. He runs across the entire bedroom and "bangs" into the window on the other side. We tell him not to do it but he does it anyway! He also loves to get a running start and run smack into my legs! Fortunately I can tell when he is lining up to run and brace for it!
Meds and a proud Momma
We started Jac's HGH shots a week ago (3/26/10). We are calling it a "little poke." The first night we did it it was a big surprise to him as we had not talked about it previously.
Since then we have only missed one night. Jac went to sleep pretty early, after a long day. We decided that we did not want to give him the injection while he was asleep. I didn't want to violate his trust by doing the injection while he was asleep.
After a few nights of doing the "little poke" I started having Jac participate in preparing the EasyPod and giving the injection. The EasyPod is a really well designed, easy to use device. One of the nice things about it is that you really never see the needle. You turn it on, put the capped needle into the EasyPod, it takes the needle out of the cap and hides it, you place it on the skin, and push the big green button, it gives the injection, you put the cap back on, it puts the used needle into that cap, and you are done! In the demo video they have online a six year old boy is giving himself the injection, with his Mom watching! Jac knows how to press all of the buttons now, with my help. He even gives himself the injection! After we are done he goes and throws the used needle in the "special trash," the sharps container under the bathroom sink.
I will not say that this is easy, but the anxiety level for all of us has gone way down. Before we started doing it I was dreading it for the months after I knew we were going to start, and when we finally started. Now, it has become part of the nightly routine. I tell him, it is time for medicine. And he says, "Squeeze Nicie's medicine (for NIcie's nebulizer)" He helps me prepare Nicie's medicine and turn the nebulizer on, and off, and wash out the nebulizer mask when we are done. Then I get his EasyPod out. It is kept in the refrigerator. He asks to "put the medicine in." We only have to reload the medicine every 21 days right now, which he is always disappointed about. I get an alcohol pad out and clean his skin where are going to give the injection. He doesn;t like this much, and it almost upsets him more than the actual injection. He turns the machine on, I put the needle in, he presses the OK button, then I put it on his skin, which he tries to get away from but once it is there and the green light on the EasyPod comes on, he presses the green button! The injection takes five seconds, and we encourage him to count or watch puppies or marbles of whatever YouTube video we have selected that evening. After the injection is done we say "All done!" and he presses the button to take the needle out. He takes the needle to the special trash and throws it away, and then we go on with what we are doing!
Some nights are easier than others. Tonight he hardly complained. Some nights he still gets pretty upset, but for the most part the upset is gone right after we are done, and we are able to just move on to other things with only a minor upset and disruption. Amazing! Kids are amazing and resilient and I never would have believed this was possible until I watched the transformation from fear to acceptance to routine to go Jac!
I haven't noticed any increase in his appetite. Maybe a small one but he has been sick which always dampens his appetite. We had to take him off the Benecalorie for a week or so because he was throwing up at night.
It feels like he is taller but I am guessing this is just me. We go back after three months on the GH for a weigh-in and height check. We have to do blood work every six months unless we don't see a response to the GH after three months. It feels like he is getting taller and stretching out - staying just as slim but taller. I feel like when I am carrying him he is hitting a different spot at my shoulder, like he can see into my face better when I am carrying him on my hip.
The GH is supposed to improve his bodies' ability to process nutrients from food, so even if he keeps on eating the same amount he should gain weight and grow.
We shall see!
(I bought a play medical kit - that has been really great in role playing medical stuff, something we had not done before. Jac's language has progressed to the point that we can discuss things that have happened in the past and things that are going to happen in the future and he can comprehend and remember both the past and the future through language! (I find the development of this sort of language truly amazing and it has been a joy to watch it develop).)
He cried a lot and tried to get away and was very upset for 10 minutes or so after. We are doing the shots after bath and before bed, in the crazy/lull period before the boys fall asleep. The next night we didn't do a bath because we had gotten home very late. Nic and I were already in bed and Joseph tried to give Jac his bath. He cried and cried, "later, later"
We decided not to do his injection that night.Since then we have only missed one night. Jac went to sleep pretty early, after a long day. We decided that we did not want to give him the injection while he was asleep. I didn't want to violate his trust by doing the injection while he was asleep.
After a few nights of doing the "little poke" I started having Jac participate in preparing the EasyPod and giving the injection. The EasyPod is a really well designed, easy to use device. One of the nice things about it is that you really never see the needle. You turn it on, put the capped needle into the EasyPod, it takes the needle out of the cap and hides it, you place it on the skin, and push the big green button, it gives the injection, you put the cap back on, it puts the used needle into that cap, and you are done! In the demo video they have online a six year old boy is giving himself the injection, with his Mom watching! Jac knows how to press all of the buttons now, with my help. He even gives himself the injection! After we are done he goes and throws the used needle in the "special trash," the sharps container under the bathroom sink.
I will not say that this is easy, but the anxiety level for all of us has gone way down. Before we started doing it I was dreading it for the months after I knew we were going to start, and when we finally started. Now, it has become part of the nightly routine. I tell him, it is time for medicine. And he says, "Squeeze Nicie's medicine (for NIcie's nebulizer)" He helps me prepare Nicie's medicine and turn the nebulizer on, and off, and wash out the nebulizer mask when we are done. Then I get his EasyPod out. It is kept in the refrigerator. He asks to "put the medicine in." We only have to reload the medicine every 21 days right now, which he is always disappointed about. I get an alcohol pad out and clean his skin where are going to give the injection. He doesn;t like this much, and it almost upsets him more than the actual injection. He turns the machine on, I put the needle in, he presses the OK button, then I put it on his skin, which he tries to get away from but once it is there and the green light on the EasyPod comes on, he presses the green button! The injection takes five seconds, and we encourage him to count or watch puppies or marbles of whatever YouTube video we have selected that evening. After the injection is done we say "All done!" and he presses the button to take the needle out. He takes the needle to the special trash and throws it away, and then we go on with what we are doing!
Some nights are easier than others. Tonight he hardly complained. Some nights he still gets pretty upset, but for the most part the upset is gone right after we are done, and we are able to just move on to other things with only a minor upset and disruption. Amazing! Kids are amazing and resilient and I never would have believed this was possible until I watched the transformation from fear to acceptance to routine to go Jac!
I haven't noticed any increase in his appetite. Maybe a small one but he has been sick which always dampens his appetite. We had to take him off the Benecalorie for a week or so because he was throwing up at night.
It feels like he is taller but I am guessing this is just me. We go back after three months on the GH for a weigh-in and height check. We have to do blood work every six months unless we don't see a response to the GH after three months. It feels like he is getting taller and stretching out - staying just as slim but taller. I feel like when I am carrying him he is hitting a different spot at my shoulder, like he can see into my face better when I am carrying him on my hip.
The GH is supposed to improve his bodies' ability to process nutrients from food, so even if he keeps on eating the same amount he should gain weight and grow.
We shall see!
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