Hives!

Something I love right now: when Jesse holds my hand and not because I am making him.

Last week was rough. Sunday Jesse had a fever. Not sure why, it was up to 102. I did the standard protocol, gave him Tylenol, monitored his temp, gave him a popsicle, gave him a luke warm bath, kept him hydrated, etc. I was able to get his fever under control and it never spiked above 102. Monday he still had the fever, but it was close to 100. Tuesday he seemed much better so we resumed the daily routine. Wednesday when he got up, he was covered in hives! I wasn't sure if the hives and fever were at all related and with my family history of allergic reactions and hives, I wasn't going to mess around. Jesse stayed home with Paul and I headed to the office. On my way I called the pediatrician's office and made the appointment. They were able to get us in at 11am. Since the pediatrician's office is near my work, I met Paul and Jesse there. When we got in the room and took his clothes off, the hives were considerably worse than how I had seen them in the morning. The doctor took one look and said it was hives. He said because Jesse had a fever earlier in the week that the hives were likely viral. The one thing that confuses me, viral hives are itchy and I never saw his scratch. They were hot, so uncomfortable for him, but not itchy.

I am skeptical about this viral hives thing. It almost sounds like an explanation for unexplained hives. I did some online research and I could be wrong, but I am just not buying it. I mentioned above my family history with hives and I'll explain. My sister gets hives, in a big way. My sisters started around the age of 2. She was sick and the doctor gave her a prescription, then she got hives. The prescription for hives made them even worse. They assumed it was from the color or flavor of the medication. By the time my sister was 4, they determined it was red dye. Since then, my sister has been in and out of the hospital because of this allergy, she even wears a medical bracelet that indicates her allergy... yes, it's that severe. So all growing up we had to watch what my sister ate. We all learned to read ingredients and to simply avoid certain products. This was back in the 70's and 80's before there were dye-free options like we have available today.

When Jesse was running his fever I made sure to keep him well hydrated, thus running low on apple juice. He won't drink as much pain water as juice or something flavored, so I gave him some watered down tropical punch kool-aide on Tuesday night. I had made it for Paul to drink and figured what's the harm? I guess Wednesday morning I found out what the harm was when my son was covered in hives. Coincidence? not sure. I mentioned my sisters allergy to him and he told me allergies are not hereditary. But when I was thinking about this theory of mine, I realized that Jesse has probably never had anything artificially colored. I feed him mostly fresh fruits and vegetables, he doesn't eat candy or junk food, I even give him no-added color freeze pops (made with fruit juice by Snapple). I really want to test this theory. I'd rather know now if he has an allergy to artificial color, before it does become life-threatening.

After the doctor's appointment he went home, got a dose of Benedryl and took his nap. He slept for several hours. When he woke he still had the hives, not nearly as bad as earlier. The doctor did say it would take a few days for them to go away. Here is what it looked like Wednesday evening. There were some really bad ones on his butt, but I didn't feel it was appropriate to be posting pictures of my kids butt on the internet.

Here we are on Monday, there are a few stragglers left, but most of the hives have cleared up and he's back to himself again. Just in time for Thanksgiving.

Yesterday we went to a friends house to watch the game and to get Jesse's hair cut. He looks more grown up.

Something Blue Images

My friend Maggie is an awesome photographer, mother and friend. She took these photos of us back in October and I had to share! If you are looking for a photographer in the Chicagoland or Milwaukee area, contact her. She's good! http://www.somethingblueimages.com/

Communication Breakdown

We've had a rough week. Jesse is at a point where he knows what he wants, but has a hard time communicating it. He points and goes, "me, me, me!". I have about 15 seconds to figure out what he's pointing at before he starts freaking out and having a 20 minute temper tantrum. Good times.

He has a very small vocabulary. There are just a small handful of words he uses that we can understand. I'm sure he's saying more than we know, but we can't understand him. The problem here is that he can't make sounds that involve blowing. We are talking about words that start or contain the letters /b/, /d/, /p/, /c/. I am sure there are more, but those are the main ones. What Jesse does, is he replaces those letters for /m/ or /n/. Our dog Coda, he calls Nona. That one we figured out. A ball is a "mo" and a pumpkin is a "momo", milk is also "mo". So as you can see, this translating can get quite confusing, they are all much different words that get the same label.

There's a lot of frustration around our house right now due to the communication breakdown. Jesse is frustrated because we can't understand him and we are frustrated for the same reason. When one of these cleft related challenges arises, I can help but get sad about things. I always get this feeling of guilt because I realize that we wouldn't be going through this if he wasn't born with clefts. Yes and no. Some kids go through this even if they weren't born with clefts, but of course in a moment of frustration, I don't reason that way. I also begin to wonder if his palate surgery was a success. Yes, this surgeon closed the hole, but is it working properly? My son can't blow. I know this. Maybe it's something he needs to learn, or maybe it's the muscles in his soft palate not working right. I just don't know, and time will tell. For now, we will try to use sign language as much as we can.

His speech therapist is well aware of all this, she gives us excercises to do with him that encourage blowing and making the sounds he has troubles with. I gave him a harmonica the other day to see if he would magically blow in it, but no. He held it up to his mouth and hummed. It was kind of cute, but did not accomplish the goal I was hoping for. I try random things because of our experience with the honey bear straw. I gave that to him and within minutes he was sucking through the straw, which he had never done before. Blowing is harder to teach. I blow in his face, I blow cotton balls of my hand, I blow bubbles for him, but nothing....yet! I have not given up! We will keep trying.

Halloween Happenings

I know I am a bit late on the Halloween post, so be it. I finally managed to keep my promise to myself (and my family) to take more pictures, despite of not having a fully functional digicam.

We did the pumpkin patch thing. It was a blast. Plus this was really the first time we had Jesse at a crowded public place without being in a stroller. He did quite well, and so did we. We managed to not lose him, or even have a scare. Parenting win right there. Ha!

The weekend before Halloween we carved pumpkins. I love this part. Jesse participated a little, he drew on the pumpkin with his crayons. He had the most fun putting the candles in them (battery operated for safety).

We love Halloween Day. We make an event out of it so I took a half day. The trick or treaters started at 3 and Paul got dressed up as usual. Forgot to get his picture. I probably took one last year and he's basically the same every year. I got Jesse dressed up, he was a pirate! Arrr! He wanted nothing to do with the hat. We tried everything, distractions, showing how cool Daddy was in his hat, nope, he wouldn't have it. So my idea was to try a bandana. Pirates wear bandanas right? Will it at least make the rest of the outfit look like a pirates outfit? Yes! otherwise it was just a puffy shiney shirt with a vest.

We actually did some trick or treating. We hit the immediate neighbors around us, then headed over to Paul's parents. Not like Jesse eats candy, but he had fun acrrying around the bucket. Grandpa did share some of his peanut butter cup though.

How's that for getting more pictures!?

Speech Therapy

Jesse started Speech Therapy through Early Intervention back in July at the recommendation of the Speech Pathologist with his cleft team. It's been going great and we really like his therapist. My sister works in Special Education, and Jesse's therapist works at my sister's school too.

His therapist thinks he's making progress and doing great. She knows we also work with him and can see that it making a difference.
Last month we had a cleft team appointment where Jesse was seen by the Nurse Coordinator, the Plastic Surgeon and the Speech Pathologist. Everything seemed pretty routine. The Speech Pathologist evaluated him. She gave the impression that Jesse was doing well. I remember her stating he was doing well and she wanted to increase his therapy to 2X a week to keep the momentum going. I actually thought that was a bit strange and I vaguely recall questioning the increase, but this is my cleft team and I am supposed to trust them, since they are the experts.

This week I got the report from the above mentioned Cleft Team appointment and I was shocked by the Speech Pathologist report. My initial shock came from the negetivity of this report. It seems to only focus about what he's doing wrong and does not mention any of his accomplishments. I suppose this would be because according to this report, he has not progressed since his last appointment, which is untrue. The report states that he's at a 13 month level (and he was 18 months old at the time), this makes him 5 months behind. He has never been that far behind, so this is telling me he's regressing? I disagree and his weekly therapist disagrees. The report has statements like "Phonological skills are significantly impared." and "It is also recommended that he have treatment two-three times a week as the one session is not providing adequite support for this child's language skills."

Not only does this bother me because it's about my child, who I want to excel, but I am bothered because I feel this is not an accurate evaluation. My son was seen in a doctor's office, by a woman he doesn't know (because he only sees her every 3-4 months). I would not expect him to be very verbal with her, as opposed to his weekly therapist, who he knows and trusts.

So now what? Do I follow the advise of the cleft team's Speech Pathologist by increasing his therapy to 2-3 days a week, or do I blow it off and follow his weekly therapists direction. This is so frustrating and stressful. I just want what's best for my kid.

The Chicken Nugget

I have a new idea in the works to get a new camera. not just any new camera, but a good one! I hope I can make this happen.

So when I had Jesse I made a promise to myself and him that I wouldn't feed him crap. Meaning, I will not buy him fast food chicken nuggets, fries or anything of the like. There's no excuse to not cook his meals. Sure, I have given him jarred baby food and on occasion Gerber Graduates meals. That was mostly due to convenience for his previous daycare providers. I did make babyfood for him and froze it in ice cubes. That's what I gave him for his home meals before he started on solids.

I've been having feeding problems lately. Sometimes he just does not want to eat. I can usually get him to eat pasta, eggs (with spinach and cheese), yogurt and fruit. But that's about it. A kid can't live on those 4 things alone. Ok, he probably can, but I feel like I need to give him well rounded meals. Meals that include meat (or protein) and vegetables. Yes, eggs have protein and veg, which is why I started feeding them to him, but I am finding myself giving him eggs 4 times a week because he won't eat much else.

Today I finally broke down and bought a bag of chicken nuggets. I feel guilty! Not as guilty as I would buying him chicken nuggets from a fast food joint, but guilty that I am still going to give him processed meat. It's not like chicken nuggets existed 30 or 40 years ago, and those kids survived. I will jusify this a little. I have made him breaded chicken breast.... but he wouldn't eat it. Honestly, I have no clue why. I liked it!

For the past 6 weeks or so, Jesse started going to structured daycare. By structured I mean that he's going to daycare that's not just a friend watching my kid. He goes every day, gets fed there and has a schedule there. The lady that runs the daycare feeds several children, so she feeds the kids much like a daycare facility would; pizza, quesadillas, spaghetti, pbj, grilled cheese, corn dogs and yes, the chicken nugget. I am not completely opposed to these foods, I just don't want my kid hooked on fast food before he can even choose what to eat. But if he needs protein in his diet and a chicken nugget is a method to do-so, then so be it. It's not like I plan on feeding him chicken nuggets on a daily basis or anything. Oh and another point of justification, I at least bought the name brand that's 100% natural with no fillers.

Reading Blogs

I read blogs at work because I have down time at various points of my day. I read decent amount of them too. They make me laugh, and cry and are a source for inspiration. Then I go home from the office and my busy life takes over.

I also made a promise to myself to take more pictures, freeze time, have memories to actually look at. Notice there are like no pictures in my last several posts. That's because I don't even have a fully functioning camera right now. My Sony does this shaking thing randomly, but more often than not. Then my Canon Rebel takes a shit?!? Seriously? I really need a functioning camera, but no funds for one. GRRR!