Tuesday, March 31, 2009

Bad Timing...

As you know, J's appt with the Developmental pediatrician is scheduled for the first week in July. It was the soonest they had available so we took it and it was/is very convenient for us since it's the Friday and Monday of the 4th of July weekend. However, we still asked to be placed on the cancellation list just in case he could get in sooner b/c having a diagnosis for him is really important b/c at this point we are at a standstill until then. So yesterday I got a call. Someone cancelled and they were able to move us up to April 16th!! 3 weeks from now!! But it won't work...we'll be in Destin, Fl. I would have cancelled the trip in an instant, but we are going to see my inlaws and we only get to see them once a year and they are looking forward to the trip. Also, I'm sure you know how hard it is to change reservations in Destin! So I regretfully turned down that appt and they will call us back if someone else cancels before July.

Friday, March 27, 2009

The best part of waking up...

has nothing to do with Folger's in my cup!! Sorry!!

For the past few months, maybe since we converted J's crib to a toddler bed, he's been waking up at the crack of dawn. We found out that he has help waking up b/c of the two St. Bernards next door who bark all night long and then start again as soon as the sun comes up. I'm still trying to adjust to his early rising, so I usually just turn up the volume on his monitor and I stay in bed for a few minutes longer. He's not a crier and totally independent and I usually find him in his room, sitting at his Elmo table, building a lego tower. Just the other day he was sitting with both Elmo chairs together, one cheek in each chair! LOL!

Well this morning was the same ole routine, only this time I don't think he was to into playing by himself this morning. I heard him get out of bed, turn his sound machine off, and then... "Maaa maaaaaaaa!! Maaaa maaaaaaaaa!"

Who needs a few more minutes when they wake up to an alarm that sweet?!?!

Wednesday, March 18, 2009

New Diet...

So J has been on a GF/CF (gluten free/casein free) diet for two weeks now. I think he should have been on the CF diet from the time he was diagnosed with Milk and Soy Protein intolerance. Wikipedia says that casein "accounts for nearly 80% of proteins in cow milk" so it makes since that a child who has a milk PROTEIN intolerance needs to avoid casein as well. And if you are one to read food labels then you will know that casein is well hidden in many foods even when it claims to be "dairy free". When we found out that J had stomach ulcers and duodenitis, I decided to try the GF diet just to see if it would help him at all. I also eliminated soy from his diet b/c I still had no clue as to if he'd outgrown the MSPI or not (and his GI docs were not too helpful at all). Well after a week on the diet, J's bowel movements became normal. He was having a BM 3-4 times a week as opposed to once a week. And they were no longer doul smelling. His pediatrician agreed that I should keep him on this diet and that he probably still has not outgrown the MSPI. Also he will be tested for Celiac Disease by a new GI dr soon (sorry if I've posted this here already!) Keeping J on this diet has been really easy so far b/c he hardly eats. So basically he eats GF dry cereal in the mornings, and Jennie-o turkey dogs (no bun) with sweet potato fries for lunch and dinner. The transition from Soy to rice was easy. I started with almond milk b/c it has a better flavor than the rice and doesn't separate as easy. Once he was used to the almond milk (and our pockets started screaming!!) we started the transition to rice. I tried just giving him rice milk last weekend and he hated it, so I offered a little bit of rice milk mixed with almond milk and increased the rice milk each day. Today he started full rice milk and does not complain about it. We are also adding Beechnut infant rice cereal to his milk b/c he depends on the milk to keep him full. I really think that this new diet is doing wonders for his belly b/c he already shows interest in new foods. A few days ago, he ate a few bites of a piece of baked chicken, and today he wanted a piece of hamburger steak, but as soon as he felt the texture he spit it out (remember he has the sensory issues as well), but just the fact that he is trusting the food enough to let it into his mouth now is progress and I'm happy about that.

We are still waiting to get the appt for the Developmental Pediatrician in N.O. He is already in their system and we are just waiting for the July schedule to open so he can get an appt. I got a letter in the mail today for a local developmental pediatrician...

"We received a referral request for your child to see a Developmental Pediatrian/Behavioral Specialist. We do not accept your insurance. An office visit will cost $350, and an evaluation by a developmental pediatrician will be $100. Please contact our office if you would like to schedule an appt."

$450. My son is definitely worth the $450, but we are aware that something is wrong and he will more than likely need more than 1 of those $350+ visits. Besides, I'm sure that their wait list is just as long as the provider who accepts our insurance, so we will just go that route. I've ended up having to get a planner to keep up with all of these appts...J's therapies, GI appts, Developmental Pedi appt, and of course, my appt to the dermatologist for my alopecia which I believe has spread. I need to take a picture of the spot and compare it to the first picture I took of it, but I'm pretty sure that it's bigger b/c my hair is MUCH thinner in that area =( I've been having dreams of my hair growing back really fast. I hope the rest of my hair can hang in there until my appt on April 6.

So let me tell you a funny J story! The weather has been so nice, so we spent much of the day outdoors. This afternoon we were out playing in the backyard. J falls alot, and when he falls myself or my husband calls out "Are you okay??" so now everytime he falls he commands us to say it by saying "oh KAAAAAYYYY???" LOL!! Well today he was climbing his slide and pushing his fire truck down first and then he would follow it. Well once he lost his footing and he fell down. Well let me rephrase that...He lost his footing and slipped, but did not actually fall...inseatd he threw himself to the ground in a very dramatic fashion! I looked away, so as not to laugh at him and I hear him saying "oh KAYYY?? oh KAAAAYYY?? oh KAAAAYYY?" So I look over and he stands up, walks from behind the slide so that he can see me, and then dramatically falls down again!!! "oh KAAAYYY?" So I say, "J are you okay?" J says "Than Du!!" Oh Lord!!!! He's so funny! I love him =)

Thursday, March 12, 2009

Crying is therapeutic...

Well, last night I think everything that is going on with J hit me hard. It caught me off guard...in my living room...J in his bed asleep and my husband out of town until Friday. So I had no reason to mask my true feelings of sadness. So right then and there, I let it all out. It started in the living room. I came to my room, said the Our Father prayer twice, and continued to let the tears flow. My husband text me. I simply said "I'm sad." and he knew why. He started texting me bible verses. Then he text me "A.S.K." Matthew 7:7-8. Ask, Seek, Knock. Just what I needed. I continued to let my tears flow b/c as the tears fell, so did some of my feelings of grief. I barely slept last night, but I had peace.

This morning J and I went to see his pediatrician. We talked. J is getting a new GI, a new diet, and being tested for celiac disease. I will continue to update my blog readers on his progress and I will continue to ASK.

Tuesday, March 10, 2009

When life serves you lemons...

I was recently awarded this lemonadestand award by my friend Emily...she passed it along to me to let me know that she enjoys my blog and that I show great heart.

First I thank her for giving me the award, b/c it's exactly what I needed to update my blog since I've neglected it for a while now. And what more appropriate award than a lemonade stand, especailly during this crazy time in our lives??

J had his first OT session on Monday. He hated it. She tried to get him to eat by "rewarding" him with his milk. For anyone that knows J, they know that you don't mess with his milk, so that made things 10 times worse :( I had to sit down b/c it took everything in me not to tell her to give him his milk. I don't think I can handle the feeding part if it only consists of forcing him to eat. So this week I cut decided to do whatever I can to make feeding less stressful. He will only be served what I know he wants to eat. Right now he is not digging his pancakes (probably b/c they are gluten free, but I think they are tasty), so instead I offer him his favorite dry cereal. For lunch I give him 2 turkey dogs without the bun, and for dinner a plate of sweet potatoe fries. That is all he wants to eat, so that's all I serve. I am not going to add extra stress to him when he has to go through it all on Monday. Once he starts showing an interest in new foods, then I will introduce them! The peditrician called in a referral for him to see a developmental pediatrician and the appt is tentatively scheduled for July. Long wait, but I'm sure it will be worth it

So I went to the Dr yesterday to have a bald spot checked out by the Dr. The bald spot started off the size of a quarter and now it's the size of a golf ball (probably a little bigger). It's alopecia. I have to go to a dermatologist to have steroid injections in my head. And the nearest dermatologist that takes my (crappy) insurance is an hour and a half away from here!! Oh well, it will be a nice roadtrip! and hopefully I'll be driving back home with some new hair on its way!

With all of that going on, who;d think I'd have time for anything else?? Well I did and I had a realtor to come out today and take a look at our house to let us know if it is ready to be placed on the market. Well it was ready and it will be officially listed tomorrow morning!! I am hopeful that it will sell and we will be well on our way to moving back home to be closer to family. I never thought the day would come, and here it is!

So, it's tough to remain positive when it seems like there's a rain cloud over your head all the time, but if you can take a step back and re evaluate everything, you'll notice that there are also some positive things to look forward to and like they say "the good outweighs the bad"!!

Tuesday, March 3, 2009

Finally an OT evaluation...

Well he finally had his eval today. I was under the impression that the OT would work with behavioral issues, but obviously they only work with kids who have specific delays. J only has his speech delay, but other than that I would say he is above average in other areas. She had him to draw a circle and he did. I wasn't surprised b/c we had been working on drawing circles and he picked it up quickly. Then he put together two shapes puzzles and the shape sorter. Again, I wasnt surprised b/c those are the activities I do with him almost daily. He also stacked 9 blocks, his favorite thing to do. So the OT told me that he seems advanced for his age and I said "Oh yes, he's very smart. In fact he can identify almost all of the alphabet." Not many two year olds can do that and I really think J will be an early reader b/c he tries to spell out every word he sees when we go somewhere. But that does not cover up his behavior issues. I explained to her that I cannot take him anywhere in public, especially if there are small kids around, b/c he starts to do this howling scream, he bites, he hits, and he head butts. He also gets so frustrated that he bangs his head on anything hard. At Chuck E Cheese, it was a brick wall. I try to calm him down and it only gets worse. Kicking, screaming, flailing about. Then all we can do is leave, so to avoid that we think it's best to just keep him home. But then the same thing happens when we have smaller kids to come over. I just don't get it and feel like I've lost control of him. She listened to my concerns and told me that Ms. Peggy (J's SLP) has even told her of J's behaviors and how hard of a time I'm having with him. She told me that she will add him to her list and she will start to see him on Mondays as well, but she will work with the feeding issue. I told her that he will also be in feeding therapy soon through the GI, but she wants to come anyway for now to see how he does and to see if she can identify anything else that may be going one with him. But for his behavior he needs to see a behavioral specialist or a social worker. Well the problem with that is that none of the specialists in this area accept Tricare and it will cost us $125 an hour out of pocket. I just started crying b/c from the beginning his behavior was my main concern and then his delayed speech. The speech is certainly getting better, but the behavior is driving me up a wall. Honestly it makes me not want anymore kids :( And you all know how badly I always wanted another. I feel guilty now when we can't take him places with us. We want to do things as a family but we can't b/c of his behavior. I want to be able to participate in playgroups and library storytime, but we can't. He can't tolerate it. So now we are stuck in the system. Towards the end of the eval, J was taking things out of the OT's bag and he found some bubbles, so she wanted to blow them for him. He tried snatching the bubbles and said "Mine." She said "you want bubbles?" and he just kept saying mine and started growling at her and grabbing the bubbles. Then he fell out and started kicking her. I told him "No J. No kicking." He got up and acted like he was going to hug her and of course he head butted her but she moved her head and he got her in the chest. Then he just had a full blown tantrum, throwing himself to the ground, kicking and screaming. So I picked him up to try and calm him down and she saw that there is no calming him down when he's like that. It's like he doesn't even hear me anymore. So I put him down before he gave me another bruise on my face and he crawled over to her, grabbed her leg, and slammed his head against it. I usually have so much patience with kids, and now I feel like I'm losing patience with my own son. The OT said he definitely needs to be seen for that, but she is the wrong person for what he needs. So I'm in touch with a social worker for kids with autism. She can't work with Jayden b/c he does not have a diagnosis of autism, but she gave me the name of someone who could "probably" help him, so I left her a voicemail and I'm waiting for a call back from her. I know we will get through this, it's just been ongoing for so long and I would love to finally see some sort of light at the end of the tunnel.