Friday, July 23, 2010

Kids say the darndest things...

at the darndest times!

Well, in our case, Jayden shows us just how great his communication skills have grown at the craziest moments! Take this morning for instance... Yesterday Jayden took a spill at summer camp and bust his lip pretty bad and also pushed his tooth back. On the drive home I was asking him about his boo boo. He is very echolaic (repeats the last word anyone says), so we hardly ever can get him to appropriately answer a question. So the conversation went like this:

Me: Jayden do you have a boo boo?
Jayden :A boo boo (points to his lip)
Me: Aw...does it hurt?
Jayden: Hurt.
Me: Did you fall down?
Jayden: Down.
Me: Did you cry?
Jayden: Cry.
Me: Aww, baby I'm sorry!
Jayden: Sowwy
But since I knew he could answer this one...
Me:Are you ok?
Jayden: I fine!

So anyway, the dentist wanted us to bring him in for x rays of his front teeth to check for fractures or any damage to the permanent teeth. The dentist came in the room and Jayden (who had made himself at home in the chair and even took off his shoes!!) was ready to show the Dr his boo boo. So here's their conversation...

Dentist: Hi Jayden, how are you?
Jayden: I fine.
Dentist: Do you have a boo boo?
Jayden: A boo boo. (points to his mouth)
Dentist: How did you get that boo boo?
Jayden: AT SCHOOL!
Me and Mike: {JAW DROPS!!}

Yeah. So we just looked at each other and I'm pretty sure I said aloud, "WOW!" Judging from the convo he held above, I bet the dentists didn't even have a clue that Jayden has a speech delay! Now this doesn't happen often and many times people ask him questions that he doesn't understand so he gets echolaic and they look to us with question mark faces. But there are moments like these where he surprises us! It gives me so much hope for his future :)

P.S. His x rays turned out fine. There was no damage to the baby tooth and none to the permanent teeth (they look like they will be HUGE though, lol!). He'll go back in 3 weeks for a cleaning and I am going to talk to his neurologist about the increase in falling and coordination. He walked into the wall at the dentist's office this morning!

Saturday, July 17, 2010

The Blame Game

The Blame Game...It's a game I play with myself in my head quite often. I admit it. I have so many people (even the professionals) who remind me very often that there was NOTHING I did wrong to cause Jayden all of the pain and suffering he's already had to deal with so early on in life. I even have genetics testing results that agree that he is genetically disposed to each and every one of his issues, including the Celiac Disease. Even with this reassurance that it wasn't my fault, I can't help but think about things in the past that make me wonder if it could have gone differently. Like when he fell out of the bed and 6 months old and hit his head really hard on the ceramic floors. He actually started to throw up. We called urgent care and they told us that if he wasn't lethargic (he wasn't) we didn't need to worry. Honestly, I never stopped worrying since that day! He's had CT scans recently due to the seizures and he's even had an MRI. The results show nothing of extreme concern and I was relieved to know that his skull was not injured when he fell at 6 months old ;) I also read that untreated Celiac Disease could lead to childhood epilepsy and cancer. I always wonder if maybe I didn't fight the GI Drs hard enough to get him the care he needed and the diagnosis that I knew was inevitable. For a few months, I ignored my mommy gut and waited until things got worse with the blood in his urine and stool and the weight loss. I wonder if perhaps I would not have just gave in and listened to the Dr would told me that Jayden was just a "happy spitter" with a mild case of acid reflux and "there is no need to have him on a special diet", then maybe we could have avoided the childhood epilepsy. On a side note, I do want to PRAISE GOD that we are dealing with the epilepsy and NOT the cancer. I cannot tell you how nervous I was waiting for the MRI results. I wonder if perhaps I allowed him to watch too much television. From the very beginning, Jayden was VERY independent and he much rathered playing by himself instead of with me or his daddy (in hindsight, this was a red flag for autism), so I also wonder about that. I'm not an "in your face" mom and perhaps I should have been.

Of all of those thoughts, one I can't seem to shake are the immunizations he rec'd as an infant. I ALWAYS ask myself if he would have benefited from an alternative vaccination schedule. Jayden is our first child and we never questioned vaccines. As far as we were concerned, we both had vaccines and we turned out ok (for the most part!) and also, we were protecting him from very harmful childhood diseases. But could the very things that we thought were protecting him be the source of all of his issues? The Celiac Disease automatically weakens his immune system. The ingestion of gluten weakens it even more. Children with weakened immune systems should follow an alternative vaccine schedule. Jayden has genetic markers for Celiac disease so he was born with it. He's been gluten intolerant since he was born, which would explain all of the GI issues that became apparent at only 7 days old. What's even more interesting is that although Jayden had been getting his vaccines on time as an infant, his development was perfectly fine up to 15 months old. He sat up at 5.5 months, crawled not too long after that, walked at 10 months, and had a vocabulary of about 10 words by 18 months. Also around 10 months old, we introduced table foods (as opposed to jarred baby foods) so he was indeed getting gluten. As a toddler, his favorite food to eat was BREAD. Bread is a huge no no for people with Celiac disease. Jayden would eat bread So at that time, his immune system was becoming weaker. At 15 months old he got the MMR, varicella, and 1st Hep A immunization. Looking back at my blog posts, this is when his behaviors started to get violent and I assumed he had a terribly early case of the terrible two's. At 18 months, he had his 2nd half of the Hep A shot. About 2 days later, we traveled to Memphis where he spiked a fever of 105.6. At the ER, they gave him some Motrin and told us to undress him. They put us in a room where Jayden pretended to eat food from the bed (hallucinating??) and "swim". We never saw a Dr nor a nurse. We sat there for close to two hours. I asked what the hold up was and we were told that there were several "more severe" cases before him. I asked for them to give me what I needed to leave the hospital and we left without treatment. The nurse made sure to say "Oh he looks much better now". Yeah b/c his fever went down with the Motrin but you never bothered to find out why it spiked so high. So of course we took him back to the hotel and it spiked again. All weekend his fever continued to got as high as 105 whenever the meds wore off. We took him to the pedi where he was diagnosed with a virus and given antibiotics. 2 days later (on my 28th bday) he stopped eating, drinking, and talking and the fevers returned with a vengeance. They immediately put him in the hospital and he stayed for 3 days. After that hospital stay, his development went downhill. He lost more than half of his words, his behavior was out of control and he was having what I noticed were sensory issues. That's when our fighting started. When I think about it long enough, I truly want to blame the vaccines...But then I am slapped with the reality that is that Jayden has a genetic disorder. The chromosome that he is missing predisposed him to EVERYTHING that he is dealing with. Perhaps the vaccines set it all off, but he wasn't going to avoid the issues for long at all.

With all of that said, if there was something I could have done differently, would I? I thought about the answer to that question long and hard and the honest answer is NO! Although I would LOVE to not have to watch Jayden struggle with everyday things like running, eating, communicating, and just playing outside. And I would love for him to not be the target of the cruel younger kids who notice that he cannot talk so he cannot defend himself if they pick on him. And I would love for him to not have to leave birthday parties early if there is no gluten free cupcake available for him to eat during cake time. Despite all of this, I wouldn't change the child that he strong boy who never gives up, no matter how hard a simple task is for him and when he does it he throws his little fists in the air and says "YAY!! I DID IT!!" My brave boy who gets pushed down and teased alot, but he never lets it affect how far he's come socially and he continues to play with the kids until they understand that he's just as fun as the other kids are. My smart boy who knows when anything in any room has been moved and he expresses his concerns immediately. My happy boy who does silly things on purpose to make others smile. My momma's boy who, despite his independence, always find the time to run to mommy and give her his signature hug and kiss. My respectful boy who says "bless you" when ANYONE sneezes, "Excuse me" when he burps or passes gas, "Sorry" in sign language when he hurts someone, "Thank you" when someone holds a door for us or brings his food to a table, "Hi, How u doin??" whenever someone walks up to us, and "Are u ok? I kiss it." when someone has a "boo boo". All of this, no one expected him to be able to do b/c of his autism and the epilepsy that is still not completely under control. However, he's doing it everyday! We have learned not to take a single day for granted. We love watching him grow and learn new things. I won't lie, it still hurts everyday to watch him struggle (the photo toxicity is a big issues right now preventing him from playing outside)and miss out on things that most kids his age are doing. But we do make special accommodations for him when we can. So far this summer he's been to Safari Camp, 2 dive in movies, several birthday parties, and swimming lessons. Next week he's going to Disney World (with a special stroller to block the sun and LOADS of adaptive equipment to hopefully prevent seizures). My hope is that he will grow up and think back to his childhood days and not feel like he missed a single thing! And I want him to blame it all on US!

Thursday, July 8, 2010

Just a little acid

Jayden's biopsy results came in and as far as the Celiac Disease goes, he it doing ABSOLUTELY FINE!! His intestines have healed, his villi are no longer flattened, and he no longer has inflammation in his intestines. The biopsy taken from his stomach, however, did show some scarring and acid wear so he is back on Prevacid for his acid reflux. The Dr is hoping that once the acid is neutralized in his tummy, he will have more of an appetite and that will help him to put on some weight. We have to continue with the high calorie diet as well. But to me, that is the BEST news ever! I mean to hear that he is healed from the Celiac Disease that was left untreated for 2.5 yrs?! Wonderful! Of course, in order for him to remain healed he has to remain on the Gluten Free diet for the rest of his life, but it has become very easy for us so I know he will do well. The reflux was no surprise b/c he's been dealing with that since birth, so I'm hoping that by putting him back on prevacid, we will help his stomach pains.

Everything else around here has been great! I had my sinus surgery on Tuesday and I'm pretty much pain free with the exception of the sinus congestion and strict instructions to NOT blow my nose and NOT to take decongestants!! The only thing I can take for pain is Vicodan. So needless to say, I deal with the discomfort during the day and pop a Vicodan so I can get some sleep at night. Oh and in case you were wondering, sneezing through your mouth is not an easy task, especially when you are known to sneeze at least 5 times in a row!

We signed Jayden up for swimming lessons starting next Monday. He is SO EXCITED! We only set him up for 2 classes a week and it's a 3 week course, so I'm hoping 6 classes is enough for him. My husband says that it will be more than enough b/c Jayden is already so comfortable with the water. He dives into the deep end (with a life vest on) and he also does back flips into the pool. He kicks his feet and pulls himself through the water with his arms. He also holds his breath and puts his own face underwater. So he is very comfortable. I would love for him to be able to swim without his life vest when we got to Orlando in a few weeks, so I'll ask the instructor what she thinks and if we feel we need to we will add a 3rd day to his weekly lessons.

Saturday, July 3, 2010

6 years ago today...

One of the happiest days of my life!!

Thursday, July 1, 2010

A healthy belly

Jayden's EGD went well this morning. Once he was done, the Dr came out and spoke with us and showed us the pictures she took. Absolutely perfect. No more ulcers. No more inflammation. And from the looks of it, she said his villi look healed, but she will get a closer look at the tissue samples she took and get us the results next week. So far, so good! It's kind of bittersweet though b/c if the biopsies come back perfectly normal as well, then he will need more tests done to figure out why he is not gaining any weight and why he has so much stomach pain.

He woke up from anesthesia just fine. Much better than last time! I was able to hold him and comfort him and as he came to, he got angry about the tape on his thumb (the O2 monitor!) b/c he wanted to suck it. The nurse gave him a popsicle instead and he was a happy camper. When he was done he yelled "Doctor!!! More peese!" You know she gave him seconds :) Once he was finally discharged he really wanted to get down and walk/run but his coordination was WAY off so we had to carry him. Now he's napping off the rest of the anesthesia, but all in all it was just fine!

Unfortunately, my aunt did pass away early this morning. The funeral is being arranged and will take place in the middle of this month. RIP Auntie Laurel. We miss you already!