Saturday, June 26, 2010

Bad Blogger

Sigh. My goal was to update this blog a few times each week, if not everyday. Mainly because I use this as a journal to keep track of the things Jayden does to amaze me EVERYDAY. There are things that I never want to forget. There are also things that I would love to forget, yet because it is so significant (like the 60+ seizures he had in 2 days)I want to remember it. But, as usual, life got in the way. This month has been SUPER busy for us. Every week of June, either Jayden or myself has had a Drs appt or two (or three!). I tried to squeeze in swimming, gym time, my at home business, my photography, and even playgroup time (yeah that didn't work out so well when I read the dates wrong on the calendar and Jayden and I were the only ones at Chuck E Cheese at 9am!!). The entire month was just like a run on sentence. No end in sight. Also, I had the big 30th birthday. Party and all. It was lots of fun! A nice break from the hustle and bustle that is life. But after the party was over, it was time to head back into reality.

Jayden had a developmental followup the week before my birthday. It was a wonderful followup. The Dr recorded that Jayden has shown significant improvement in all areas of his development. Eye contact is perfect and his social anxiety seems to be a thing of the past. He interacted with the Dr and the resident. His attention span is still terribly short so that caused him to score quite low on the cognitive level and his speech scored at a 23 month old level, but he has improved so much that the Dr feels that the autism diagnosis is no longer warranted. She feels that his delays are largely due to the chromosome deletion which is known to cause global developmental delays, along with a host of other problems, which he does present with. She feels that with continued therapy services, and the care of a good neurologist and GI for his Epilepsy and Celiac, he will be just fine!

On this past Tuesday, he had a followup with his GI Dr. Just to show you how jam packed our month was, I had NO IDEA he had a followup with his GI this month. When I got the recorded message that he had an appt, I had to call back and ask them WHO he had an appt with! Unfortunately, this appt didn't go as well as the appt the week before had gone. As you know, when Jayden was hospitalized in April for his seizures, he'd lost 6lbs. He went from 35lbs to 29lbs and this was in the beginning of April. The GI doc was very concerned with this b/c of his celiac and b/c he does not have the best appetite at all. By the time we went to see her for a followup in May and to see the dietitian, he was up to 33lbs, but she still was not happy with that so the dietitian had us to start giving him pediasure and gave me a list of fatty foods to feed him. He's been drinking the pediasure just fine and I've been adding chocolate syrup to it. However, his appetite is still just not there. Getting him to take more than 3 bites of baked beans in a 24 hour period is a struggle. So when he went in on Tuesday (6 week followup), he still weighed in at 33lbs. The Dr said he had only gained an ounce and there's the possibility that he actually lost some weight depending on what he was wearing. She was expecting him to at least be back at 35lbs after the 6 weeks of increased calories (and I have been pushing and counting calories). He was also in tears and bent over, crying in pain during the appt, so she's concerned about his stomach. He will be having an EGD w/ biopsy done soon. She wants to check the condition of his intestines and his esophagus. Jayden is NOT underweight. The concern lies in the fact that he has lost a significant amount of weight and he cannot gain it back. Celiac Disease and weight loss (in a toddler) is not a good thing, so she just needs to have a closer look. I hate to have him put under anesthesia again, as I can still clearly remember how hard it was for me to watch him struggle until he went under the last time :( But, like every other mother, I hate to see him suffer everyday. I want him to know what it's like to have a tummy that does not hurt everyday. He deserves it.

And I will end this post with some really good news! You know the language explosion that many moms say happens around 18-20 months of age? Well it looks like it finally found it's way to our residence! We've been waiting nearly 2 yrs for this moment! A few weeks ago, Jayden was in his booster seat and was ready to get down, so he started to yell "DOWN DOWN!" like he usually does. Before I could get to him he closed his eyes tight, as if to concentrate, and then he opened them and said "Mommeeeee, I DOWN!!" Mike and I just looked at each other. And the phrases have been coming ever since, out of nowhere. Last week we were driving to my aunts house and we stopped at a red light and Jayden said "Mommeeee, I want to watch a movie." Again, Mike and I just looked at each other. The other day at the hotel, Jayden got off the elevator and there was a lady waiting to get on and Jayden looked up at her and said "How you do-eeen?" and the lady replied "I'm fine sweetie!" OMG. Other things he has said to shock us..."Mommy, I hot!" "I don't want to do it!" "What you do-een?" "Where we go-een?" and this one we really couldn't believe "Mommy, I hungry!!" Don't get me wrong, the phrases are little gems that he presents us with rarely, but everyday which is BIG for him. He still does ALOT of meaningFUL (it means alot to me!) gibberish, but he is trying. Every mom I've come across who knows about Jayden's speech delay would tell me "Don't rush it because once he starts talking you will want him to be quiet." I know it's just their way of making me feel okay about the situation, but I am happy to kindly say that they were WRONG! In fact, when Jayden talks, I drop whatever it is that I am doing and I answer his questions over and over and I encourage him to continue. The fact of the matter is that when my baby talks, I never want it to end :)

1 comment:

Jess said...

Sounds like there's a lot of progress!! The talking--that's a big deal!

I hate that people say things like "you'll want him to shut up/stop eating/etc." Ugh. It only shows that they have no idea where a person is coming from, AND that they don't care to really hear what you're saying about the seriousness of it, either.