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 :)

What a weekend!!

We had a wonderfully busy weekend over here! One of my best friends turned 30 on Sunday (wow, we are all turning 30 this year!), so she threw herself a birthday party on Saturday. Friday, I helped her run a few errands while Jayden stayed home with Daddy so he could take a nap. Friday evening, I picked up Jayden and we headed back to my friend's house to finish fixing the food for the party. I had a great time with her and Jayden played like such a big boy with her nieces. Saturday, we headed to the party and I got a speeding ticket on the way there! Great way to ruin my day :( I was actually going with the flow of traffic and failed to keep an eye on my speedometer (am I the only one who does that??), but when I saw the cop car, I glanced down and saw that I was speeding so I slowed down and I guess it made me quite obvious...The cop pulled me over and made me get out of the truck. Fun times. I took my speeding ticket and continued on my way to the party. Jayden was a tornado, to say the least. He wanted to play outside, but as soon as he got outside he would realize how hot it was and come right back inside. Then, once inside, he decided he wanted to go play outside. This went on the entire time! Over and over and over. He eventually got his little toes closed in the door :(

As you know, b/c of Jayden's Celiac Disease, birthday parties can prove to be a bit rough for Jayden as far as food selection goes. And a biggie is always the birthday cake! What kid doesn't want cake?? Jayden, however, seems to be getting used to our routine. Sing happy birthday and then come to mommy to get his gluten free cupcake. He sat on the side and devoured his cupcake. After a while, we had to pack up and head over to the next birthday party. We got to this praty just a few minutes before they sang Happy Birthday. I lost sight of Jayden and when I found him he had helped himself to a plate and a fork and was pacing around the cake table! lol!! And then it hit me...DAMMIT! I'd only packed ONE gluten free cupcake. I ran to ask a friend of mine if they had any popsicles, or anything as delicious as that cake (in a child's eyes) that would appease Jayden, but all she had was ice cream. I believe that Jayden is lactose intolerant, even though the dietician says it's not likely, so I carry around lactaid supplements just in case. I ran to his bag for the lactaid and there weren't any in there! He was in line waiting for cake! I had no idea what to do other than to leave the party that we had just arrived at. I decided to give him just a spoon full of icing from the cake (buttercream icing made with powdered sugar) and a scoop of ice cream, praying that the dietician was correct. He devoured it, and was satisfied and enjoyed the rest of the party.

Sunday morning he woke up complaining about his tummy. This is usual for Jayden b/c he still has constipation issues and the day that he finally has a BM, his tummy hurts. But this was different. He was clammy and he would cry and run to find me with his shirt held up saying "Tummy!!!" I would kiss his tummy and he would walk away still, looking sad. The pain would come in spurts and hit him all of a sudden so I knew it was stomach cramps. He was miserable all day and could hardly eat anything. That evening my husband and Jayden came with me to an outdoor photo shoot and Jayden was going to feed the ducks while I did the shoot. Well when we got there, Jayden was crying and moaning. My husband took him out of his seat and laid him across the back seat and rubbed his back. A few minutes later, Jayden moaned and rolled over to his hands and knees and lets just say that in the end, I had to throw away a pair of shorts, underwear, a towel, and a blanket that we were using to cover his neck from the sun! It was bad, but Jayden felt better immediately. I had packed an extra set of clothes and a pullup, just in case, so he didn't have to run around bottomless! Monday, he still had a few stomach cramps, but he's been much better since then and is at summer camp today. I really do believe that it was the ice cream that hurt his tummy so badly. Sometimes, you just have to follow your gut.

1step forward, 2 steps back

Well, since that last MARVELOUS update, poor Jayden has contracted ANOTHER staph infection. He had just gotten over a pretty bad one in March. This one is just above the area where he had the first one. He's on antibiotics for it and it's draining, but painful for him.

So today was his followup with the GI Dr. I was looking forward to this appt b/c Jayden has been eating so well lately. Well it seemed great to me b/c he went from not eating anything, to eating 3 meals a day (although very small portions and no real variety), and lately he's been eating 2 meals a day. I could even see that he'd put on weight. So we got to the Dr this morning and he weighed 32 lbs. He was 30lbs when he got out of the hospital, so he gained 2 lbs. The Dr walked in the room and the very first thing she said was "He's lost weight and I'm very concerned about that." Jayden weighed 35lbs at his last visit 2 months ago. During that visit, the Dr told me that she was concerned about his diet and that if he lost any weight, we'd have to discuss a feeding tube. So here he is 3 lbs lighter than he was at the last appt. She sent him for blood work and we have to send in a stool sample. Depending on those tests results, he may or may not need to have another GI scope done.

We headed upstairs to get his blood drawn. Jayden usually does so well with this, but I think after being at the Dr for the staph infection and remembering that pain, he was not ready for more pain. He did cry when they drew his blood, but he definitely didn't freak out. No kicking or screaming, just an upset cry. When the nurse finished, she gave Jayden 2 spiderman stickers and a sucker. We walked out and I was opening his candy when Jayden started crying and saying "Scared, monster." and he was walking very wobbly. I figured he was being dramatic so I said "It's okay baby. It's all over, no more needles." and I continued to open his candy for him. Then he stumbled over to me and clenched on to my leg really tight and let out a loud scream and said "MONSTERS!!" Then he was hyperventilating. He'd had a seizure :( I had to sit down with him and calm him down but I couldn't sit for long b/c I was starting to have a panic attack and needed to get out of the clinic for some fresh air. Jayden was a s sack of potatoes by then. I put him in his seat and we went to grab lunch (that he wasn't even alert enough to eat) and then headed back to the clinic to meet with the dietician.

As it stands, Jayden needs 1400 calories a day. The dietician estimated that Jayden takes in approximately 650 calories or less, which is not good. I told her what all I've been doing and she said it really sounds like I'm doing all I can. She suggested some minor changes to increase his caloric intake, but really she believes that his gut is just taking a longer time to heal. She mentioned the feeding tube as well, so I do feel a bit defeated and I feel anxious b/c I have 4 weeks to get him to gain more weight and even then, that won't guarantee us that he won't still need a tube. I know it's not the worse thing in the world, but I truly expected to hear different news this morning.

We made it home and Jayden got in his bed and immediately threw up all over himself and his bed. Today has been one of those days that I just want to wake up and start all over again. And also, I went to the Dr for my back last week and the x-ray showed that something is wrong with my discs, so I'm having an MRI on Thursday. I'm doubled over in pain now, from having to carry my sack of potatoes around after his seizure today. I hope that whatever is wrong with my back is easier to fix than Jayden's Celiac and seizures are b/c he depends on me!

BTW, I just want to make sure no one is freaking out thinking that their 3 yr old is underweight and may need a feeding tube b/c s/he weighs the same or less than Jayden. He's not underweight, (although he is on the lower end of the scale in comparison to his height) but it's not a good thing for a child his age to lose weight and we already know that he has the Celiac Disease so he has intestinal damage.

THE BEST UPDATE EVER!!

It's been a while since my last update, but I'm happy to say that Jayden is doing better than he's been in months!! He's like a brand new child! We did have a set back due to the addition of Keppra!! for his seizures. He was getting bad reports from school and he was out of control at home and not getting much sleep at night. He was also VERY emotional. If anything left his sight (including me, or a favorite toy) he would get frantic and fall out on the floor weeping :( I read online that children with epilepsy usually have an increase in seizure activity whenever they get sick. Jayden had strep throat and bronchitis when his multiple seizures started, so I say he was pretty sick! So I was thinking that he really didn't need the Keppra!! anymore, and since he was on the smallest dose, I wouldn't need to wean him off. I could just stop it. I called the neurologist and explained my concerns and he agreed to stop the Keppra!! and said for me to keep it handy in case the seizures start again. I think his last dose of Keppra!! was Monday morning, and so far he has been absolutely fine. Each day of school, his report said that he participated well in EVERYTHING! And one day we pulled up to pick him up and saw him taking turns on the slide with his friends. He made a mistake and pushed one little boy in an anxious attempt to get one last slide in before he went home and he got down and did the sign language for sorry and even said "Sorry Trevor"!! I was so proud of him!

Now, I have even better news!! My child EATS!!! He has been eating at least 2 and sometimes 3 meals a day! And get this, he actually ASKS me to eat!! WHO IS THIS CHILD?? This is not the same child who was on the verge of getting a feeding tube placed b/c he wouldn't eat anything other than McDonald's fries once a day! Now he's eating grilled chicken and begging for more. And I have to say a big thank you to a lady named Elizabeth Barbone. I've searched the web for Gluten free recipes, have two other GF cookbooks, and I've tried so many tricks, but all of those recipes were bland and grainy and Jayden wouldn't go near them. Well I saw on a website that this book was a must have in a gluten free kitchen. I saw that it was for baking and thought "I really need FOOD recipes, not desserts" but I still went ahead and ordered it b/c I know I'd been looking for a better cornbread recipe for Jayden. Well this book came in and there's a recipe for buttermilk pancakes. I decided to make a batch since I had all the ingredients on hand. First pancake came out and I tasted it, fully expecting a mouth full of sand...UM, boy was I wrong!! That pancake was better than any gluten filled pancake I've ever tasted. It tastes like the good old fashioned pancakes my grandma used to make for us as kids!! I ate the entire thing!

Then when the next one came out, I offered it to Jayden. I watched him from the side of my eyes and he never sat his fork down. He was happily eating the pancake! And then, when he was done with it, he sat his fork on the table, finished chewing what was in his mouth, then reached his plate out to me and said "Mommy!! MORE!!" HAPPY TEARS!!!! OMG, I gave him as many as he wanted. He stopped at the third :) I froze what was left and he's been enjoying pancakes and sausage for breakfast for a week now. Then he'll eat a sandwich for lunch (usually a late lunch since he eats so much breakfast now!) and a chicken tenderloin for dinner if he's in the mood. I know it's repetitive, but this is a miracle for a child who was living off of fries and milk! And he put on the weight that he lost when he was sick. He looks and acts so much healthier now!

He has a GI appt scheduled for the 4th and we are also meeting with a dietician and were supposed to discuss a feeding tube. I seriously doubt that we will need to discuss that tube anymore! Praise the Lord! I know he will still have set backs since he has the epilepsy, but for now we are living in the present and taking it one day at a time. Thank you to everyone who has been praying for him! And if you don't already have Elizabeth Barbone's cookbook, you need to get it!! It's a must for ANY kitchen! Even if you are not gluten free!!

Lunchtime

Anyone who knows Jayden, knows that he is not a fan of eating. But what most people don't know is just how afraid of food he really is. Sitting at a table with a plate of food in front of him is the worse form of punishment for Jayden. This fear comes from the constant stomach pains he had up until he was diagnosed with Celiac Disease at 2.5 yrs old. Can you imagine being in pain for that long? And everything you ate made it hurt worse? So his fear is definitely understandable. Everyday is a struggle to get Jayden to eat and there has NEVER been a day that he has eaten a full 3 meals. In fact, getting him to eat 2 meals in one day is rare. So when he does eat a meal, we are very thankful!

It always begins with him attempting to ignore the plate in front of him. Don't want to eat? Then just put on a show for mommy and daddy!!

Eventually, he realizes that he needs to at least try the food in order to get down from his seat. Although he loves his gluten free bread, anything that he eats always begins with this same look of fear on his face, and it breaks my heart :(

But usually he'll realize that he likes it and it didn't hurt his stomach the last time he ate it so he''ll take a few more bites. He never eats much at all though, but something is always better than nothing.

These pictures were taken last week. Today wasn't a good day for eating. He refused breakfast (gagged on it even) although it was his favorite, suasage with maple syrup. He also refused lunch and he hardly ever eats dinner. And this happens very often. It's funny the things we take for granted in life. A mother never realizes just how important something as simple as eating is until your child downright refuses to eat.

Betty Crocker ROCKS!!

Yesterday evening, we made a stop at Walmart for some last minute stocking stuffers. While there, I stopped in the baking aisle to get a box of cake mix to make a recipe that my friend, Lyndsay, posted on her FB page. Fudge Crinkles...yummy! I decided I'd make these cookies for Santa (wink, wink). So as I am scanning the shelves for the correct cake mix, I see something that made me gasp!! Betty Crocker GLUTEN FREE brownie mix!!! Yes I get very excited when I find something that my baby loves that is now GF, and I especially get excited when it's an regular brand and not a GF specific brand. The GF specific brands usually cost $5+ a box. Betty Crocker's Brownie mix was $3.50 at Walmart (still a bit more than the regular mix, but certainly not as bad as GF specific brands). There was also the cake mix. I didn't see the cookie mix at Walmart, so grabbed the brownie mix and threw it in the basket. My husband wanted me to throw a few in the basket, but I want to be sure it's any good first. Not that I don't have faith in Betty, but most pre packaged GF baking mixes are VERY grainy. So grainy that Jayden won't bother eating them. It's almost like eating warm sand. Brownies shouldn't be bad though b/c cocoa powder is safe and it helps to keep the mixture moist. We will see. When I bake Santa's cookies (wink, wink) we'll also have him some GF brownies just in case he wants to try those. I'll let you know what Santa thinks (wink, wink)!! Also, I don't think I mentioned it here, but I baked a GF angel's food cake from scratch for Jayden's birthday party and it was DELICIOUS! Fluffy and moist and not so grainy. All of the kids loved it. I'll share that recipe soon, but for now, I need to get back to my elf duties...assembling toys for my spoiled little boy!!

Eating

For the past few weeks we've noticed that Jayden has been eating more. Usually he is a VERY picky eater. Just last month his diet consisted of only hot dog weiners and fries. If I placed anything else in front of him he had a HUGE fit. This had been going on for over a year and Drs kept saying it was a phase and to keep offering him new items on his plate and eventually he will eat it. Well it was far too stressful for him and far too wasteful for me, so I served him what I knew he wanted. I had a feeling that he would let us know when he's ready to try new things. Ironically, he's decided to try new things once his prevacid dosage was increased and his new GI diagnosed him with celiac and we knew then that we had to keep ALL traces of gluten out of his tummy. Maybe now his stomach is finally getting the chance to heal after 2 yrs of pain. Recently he's started showing interest in what we were eating on our plate. It's like he was starting from the beginning, you know when your infant starts to show interest in the food on your plate and you know they are ready for solids. My poor baby was afraid of food for so long and finally he was ready to give it a try. He would examine our plate and then say "Open" and hold his mouth open like a baby bird. I would offer him a bite and either he would eat it and ask for more, or he'd put it in his mouth, examine it with his tongue and then spit it out. But we still celebrated for him for at least allowing it in his mouth, which is a huge step for Jayden. 5 weeks ago when we got the diagnosis, I started to pay more attention to the meals I cook at home and the foods I buy to keep in the house, just in case he decided to start eating what we eat. Going on a gluten free diet is really not as hard as people think. Of course you will greatly miss regular bread and baked foods using regular flour b/c let's face it, gluten free flour just does not compare! A gluten free diet also eliminates fried foods (unless you use a GF alternative) and any and everything containing wheat. However, meats are okay as long as they aren't injected with broth. Rice, potatoes, beans, fresh veggies and fruit can also be eaten. So when you think about it, there are several option available on the GF diet, as long as they are prepared safely. But it's hard to go on the diet if you are a picky eater like Jayden is. But I continued to read labels and use GF ingredients when I cook just in case. Well I have big news...Jayden has been eating the same things we eat for dinner for almost 2 weeks now!! Of course there are nights when he would rather not eat, but I can sit a plate in front of him and he will not scream! Praise God. He is making some positive strides. On the 4th we had a family BBQ and usually I worry about him going to cookouts b/c usually there is nothing he can (or will) eat. So I packed him some GF snacks and GF beans. I didn't have to open his beans though b/c Jayden ate 3 hot dogs (they were GF, expensive but taste great!), a piece of chicken, and some of my rib. I was so proud of him! Also, after his appt on MOnday, we went out to eat at Outback with my parents. If you have anyone in your family with Celiac Disease, Outback has an AWESOME gluten free menu. We ordered Jayden the grilled chicken on the barbie with sweet potatoe fries and he ate it all!

I am so thankful for this. Now that he is eating better, it will make it so much easier to prepare meals for him and hopefully by the time he has to start preschool in January, they will be offering a gluten free option so that he won't feel set apart from his classmates.

Celiac Disease

My poor, poor boy just seems like he cannot catch a break!! Honestly though, I've been suspecting this since late last year. I even started him on the Gluten Free diet myself in January, only I was never as strict as I could have been with it. I mentioned Celiac Disease to his GI dr at UMC, whom I would like to call Dr. WhoCaresWhatYouThink (Dr.Wcwyt), she told me that she doubts if it's Celiac b/c it doesn't present itself with chronic constipation, only with diarrhea. Mind you, Jayden had so many other symptoms including irritability, stomach pains, foul smelling stools, and gas. I even mentioned to her that he had been on a gluten free diet for about 2 weeks prior to the appt and that I noticed a significant change in the frequency and the smell of his BMs. She still didn't think that we were dealing with Celiac, but wanted to do a GI scope to rule out a stomach infection. So he had the scope done in February. She immediately told us about the stomach ulcers and said that she would call us with the results to the biopsy to see if he has an infection. She never called. I had to call the nurse 2 weeks later and she put me on hold and said, "The biopsy came back fine and he just has duodenitis (inflammation of the small intestine), so just continue with the prevacid 15 mg and follow up in 6 weeks." That was the point where I decided we needed a new GI and a 2nd opinion b/c I need to know WHY my 2 yr old has ulcers and inflammation in his small intestine.

So now we are seeing Dr. Awesome over at Baptist GI Associates. After the appt in April, she wanted us to follow up with her once she was able to retrieve the records from Dr.Wcwyt and see if she can get enough info from the pictures and the notes from the procedure in Feb, hoping that he will not have to have another one done. Well we went in this morning and first she asked me about the stool softner. For Jayden 1 capful (the normal dosage) is WAY too much. It causes him to have diarrhea all day and all over. A half of the capful was not much better, explosive. So really all I could give him is like 1/4 of a capful and that loosened his bowel movements but he still only goes maybe 3 times a week. So she said that is telling her that he is not just constipated alone b/c if that was the case then the 1 capful would be what he needs. So his constipation is a symptom of an underlying condition and it won't be fixed without first fixing the underlying condition. Then she said "So the Drs at UMC told you that the only reason why they thought he doesn't have celiac is b/c of the constipation?" I told her yes, and she said "Oh he has celiac disease." She reviewed the pictures and the notes from the EGD and she said it would be senseless for her to put him under to do another EGD herself b/c everything that she looks for when trying to confirm a celiac diagnosis was right there in the pictures and the notes. She said that his small intestine was very inflamed and his villi are damaged. She said instead of them looking like straight fingers, they are shrinking and looking like little balls. She also told me other significant findings from the pictures and the notes and just cannot understand why there wasn't a concern by the other Drs at UMC. She ordered the celiac bloodwork for Jayden today but she said she won't be surprised if it comes back negative. It's usually not accurate in children his age, but it may show some antibodies due to the fact that he's been eating regular bread all this week and that seems to upset his stomach more than any other non GF food. However, she said that the EGD is basically the picture of a celiac GI system and he needs to be on a 100% completely gluten free diet starting today (He had his bloodwork done this morning).

100%. Wow. That's going to be hard. Have yall seen how cute my little boy is?? He has the most beautiful eyes and those long eyelashes!! And he knows how to use them to get what he wants...



Man, I feel sorry for MYSELF!!!