Our micro-preemie son's journey

Update – Fall 2012

Wow. I don’t even know where to begin. Grab a drink and a snack. This is bound to be long, as I try to cover quite a few things.

Back before Cayden’s party, we discovered that Cayden was suddenly starting to say more words. By the time his party rolled around, he was trying to repeat what we would say more often than not, but was unable to really engage in “conversation” or really “talk” to us. Then somewhere over the summer, he all of a sudden had a HUGE vocabulary and we could understand most of what he was saying.

Then we discovered that he had quite a large sight word vocabulary that has steadily been building. He loves to recall the sight words to “read” to people and is building on his basic reading skills.

Before the summer was over, he got his SMO’s and they have drastically improved his alignment, which is helping his balance and ability to do things like increase his speed to not quite running, and working towards jumping.

He has had a few really bad ear infections from allergy/sinus mess. It’s hard to watch him so miserable.

On October 12th, we said goodbye to Mr. Kitty, Cayden’s best kitty friend. He has always been there for Cayden since we brought him home, acting like a daddy figure to him every step of the way. He was amazing. It was horribly difficult to say goodbye and explain it to Cayden. He still talks about him and has told us on multiple occasions that he loves Mr. Kitty and that Mr. Kitty loved him. We always validate his feelings, even if it brings up some tough emotions on our parts.

Cayden has seen neurology, had an EGD, had a follow-up with GI, and physical medicine.

The EGD showed that he had mild reflux, possibly slow motility, and maybe even an allergy. We had to do the blood work for Celiac and it came back negative, so we aren’t going gluten free at this point. However, Dr. K thought it would be a good idea at this point to try an appetite stimulant to get Cayden to eat more, in hopes that he will gain some weight. He is barely holding at 25 pounds at almost four years old. He is growing, but it is definitely on his own curve. He can wear a size 12 month in the waist, but needs a 2T/3T for length everywhere else. He is just small. We hope that with increased weight gain, that the reflux will finally “go away”, but are prepared to go back on medication if need be, which looks like a possibility again now that he is eating more.

Neurology last saw him when we were really focusing on sign language and I was still “bobby”, not mommy. Dr. R was incredibly impressed with Cayden’s speech and how far he has come. He feels like even though he is slower at gaining in his motor skills, which has also affected his speech, that he will probably continue to make progress because he is still progressing. Of course, time will tell. Dr. R played with Cayden and even let him pretend to order pizza on the phone in the room. It was too cute!

Physical medicine is glad to see his braces doing what they are supposed to do. We are to follow up in the time frame and just keep an eye on his braces for adjustments as needed. He was quite a ham and showed off to them.

We had his annual ARD for school and it was a great meeting. Mommy is having to face the fact that her little boy is growing up and that is tough. He has mastered almost all of his previous goals, far faster than any of us expected, especially speech. He has lots of new goals, including working on math skills, reading skills, improving his motor skills, and working out some of the severe anxiety and learning coping mechanisms for his sensory issues at school. We are exploring the possibility of psychology services for his anxiety because it can be debilitating for him. The biggest change is that he is going to the higher level PPCD class that will become a co-teach Pre-K class after the first of the year. I know it’s the right spot for him, but it’s hard to watch him leave Mrs. Perry’s class where he has just blossomed. Of course, my worry is just that, mine, because he is doing amazing in Mrs. B’s class.

Cayden has developed quite the little attitude and is SO funny! He is always surprising us with new vocabulary and sentences. His new thing is telling us we are “mean” when he doesn’t get his way or is being disciplined. I was “mean” for making him eat two, yes two, bites of his dinner the other night! LOL! He talks about his sister all the time and his little imagination is exploding. It’s fun to listen to him role play with his toys. We play McDonald’s all the time, and he “rescues” people, his cars, and makes conversation between his toys. He’s trying to learn more self help skills, but is seriously lacking there. We are encouraging him to be more independent, yet, at times, it sure back fires on us.

All in all, he is just amazing. The improvements this year have blown us away over the last eight months. We just know he is going to continue to amaze us.



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