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 want...to...GET 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 :)

Update to the 1st developmental pediatrician appt

Well as you know, this first appt was just for Mike and I. J stayed home with my mom. They had a blast, but almost ended up having lunch in her car b/c she couldn't figure out how to get him out of his car seat!! She figured it out though ;) We arrived at the appt 30 minutes early and filled out developmental paperwork on J that took well over an hour!! And I like to think that I went through the forms quickly. On the back of one of the forms, there was a list of about 250 words and we had to circle the words that J could say. We circled over 60 words for him, which is seriously a HUGE leap from where he was at only 10 words in November. He's certainly delayed, but he's getting better which is good and reassuring for us. The Dr ran a little behind, but once she got to us, she took her time with the interview and we didn't feel rushed at all. I had a developmental outline that I put together for this appt once we noticed that J had some issues going on. She was VERY thankful for that and used it as an outline for the interview. We went down the list and everything that concerned her (which was just about the entire 3 page list!) she made a note of it and asked questions if she had any. She asked about some of his actions and behaviors and sometimes we'd tell her something that we just KNEW were concerning behaviors (like always lining up his toys) and she would tell us "Not necessarily concerning.." and then we'd tell her things that we thought were cute (like how he gets so "excited" when company comes over that he starts running in circles) and she'd say, "Oh, not good!" I love that she is so honest b/c I really want someone to tell us straight up what's wrong. I had my big girl panties on. So we went through his entire development and her main concerns are his speech and his behaviors which are autistic in nature. She said his speech is developing in a very strange pattern b/c he has words and can understand what we say, and he can also effectively communicate nonverbally (even my mom was able to figure out his needs yesterday and she only had to call me once b/c she wasn't sure what sign he was using which BTW was candy of course!!). The Dr said that it's remarkable that he knows his entire alphabet (can say them and identify them) but he cannot communicate verbally. She compared it to an infant that learns to sit up on it's own and skips right ahead to walking...no crawling, pulling to stand, or cruising. So that's a concern and she wants him back in speech therapy asap. Like THIS MONTH! Her other concern is his behaviors. She said that from what we are describing, it sounds like he is experiencing social anxiety. She then asked us if there were any recent traumatic events to cause the anxiety, but of course there isn't, so there's an additional concern as to WHY he has such high anxiety in public situations. Also she is concerned about his "fits of rage". I explained to her how everyone tells me that their children have really bad temper tantrums at this age and that it's just the terrible twos, but that I feel that he does have temper tantrums "but he also has....I can't think of the rights words to use here..." and she said it for me, "fits of rage". Described it perfectly. I know for a fact that when J falls out on the ground b/c I tell him no he can't have something, it's just a typical toddler temper tantrum and his are just a tad bit more extreme, yet they are still typical for his age. However, when I tell him that he cannot take a bath with me this time and he starts to scream a blood curdling scream and runs out of the bathroom, straight to my niece's room and pulls down the bookshelf, then runs straight to the living room and knocks 3 vase(s??) down from my mom's end table sending them smashing to their demise, all in less than a minute and screaming the blood curdling scream the entire time (yes folks, this actually happened!)then I don't think that's your typical toddler temper tantrum. I think that's a fit of rage. And it happens often and are never predictable the way that tantrums are. It drives me insane when people tell me "Oh, he's just being a boy". Whatever. If that were the case then everyone with boys would have to have a house wrapped in bubble wrap (which we've seriously considered!! lol).

One thing that the Dr was certainly pleased with are J's social skills, and as many of you may know, an autistic child typically lacks social skills. Yet J teases us, speaks to strangers in public (as long as they aren't babies), initiates play with older people, and has great eye contact as long as he isn't in an overwhelming environment. However, the only way that the Dr can be certain of his social skills is of course if she meets him. Social skills is what she evaluates when he goes to see her on July 6. Everything else that we described above, she is not expecting to see at the eval. But this is where she will see if he's actually socially awkward towards strangers b/c of course he isn't with us. She told us that he already gets points for that b/c some kids on the far end of the spectrum are not even social with their parents and that makes me so sad. So at the appt she will have J to pick out toys from a bunch and watch which ones he favors and how he will play with them. She will also initiate play with balls, balloons, bubbles, etc. The catch is that he has to play with her or at least NEAR her. Uusally that's a tough one for J b/c he only likes to play with people if they are rough housing or playing chase. Another one of those things that we though were OK, yet she told us it's not b/c that type of play is simply stimulating play which he seeks since he has sensory issues. So he needs to be playing with or around other kids (parrallel play) using items at times. Usually, when I pick him up from the YMCA childcare he is either playing next to one of the workers by himself, or sitting at the table coloring by himself. I can't say I'm worried about the eval b/c if he does have true problems with socialization, I want her to catch them at the eval. For the most part, I think he will do well b/c he loves adults and bigger kids, but I'm sure she will see that he would much rather rough house as opposed to playing with toys with her since my husband and I have that problem and his therapists had that problem as well.

Whoa. Long post. Sorry. Anyway, Dr. F does feel that J may have autism, however she doesn't think that he's on the spectrum, judging by our 1st interview, but of course she cannot make a diagnosis until the 2nd appt is completed. She explained to us that in the past it used to be that a child HAD to have socialization problems in order to be considered autistic, but research has found that this is not always the case and there are several children with autistic tendencies yet they are pretty social. These kids are considered to have atypical autism and they are diagnosed as PDD-NOS. She believes that this may be the case with J, but again, she cannot be sure until she does his social eval. She said that either way, just from the strange speech development pattern, the social anxiety, and the bad tempers, that he will have some type of PDD diagnosis. She also scheduled him to have genetic testing done to confirm. Neither of us flinched at the news. I really think that the minute parents walk into that clinic, sign their name on the list, and sit in that room for the appt is when acceptance occurs. We knew what we were there for and that the odds of leaving there and hearing "Oh there's nothing wrong with your child, he's developing normally!" is pretty slim. So with that she told us that she wants him back in speech therapy asap, and he needs to get into behavioral therapy and to see a child psychologist. None of which is available to us here in good ole MS thanks to the insurance that we have, Tricare. We could just wait until July when he gets his official diagnosis and then apply for Special needs Medicaid, but the approval process for that takes at least 30 days, so we are looking at him not having coverage until the end of August if we go that route. He's been out of therapy since the end of April and he will be 3 in December, so that's just not the best idea. The best thing that could happen for us now would be for this house to sell like this month and we can pack up and move to Mandeville and start J's therapy there asap (I already have the lists of therapists available to him in Mandeville). But honestly, what may end up happening is J and I leaving my husband here and going to stay with my parents until hubby separates from the military in Oct. It will be hard, but we have to do what's best for J right now. Tomorrow we will talk to the real estate agent to see about lowering the cost of our house without us losing any money and I will be on the phone calling the numbers given to me by the Dr about any funding available for kids with autism just to see if we can get him some help here while we are still in MS. We'll see.

Oh and just as we suspected, J is still the same ole J he was before this appt. The word autism doesn't make him look (or act!) the least bit different! Strange huh?? lol. Love that little boy :)