Blessed...

Tuesday, May 19, 2015

May...

May has been an interesting month...
The last 2 weeks included two birthdays, homeschool evaluations, 3 kids to the dentist and a very short trip to Ohio.

My sister and her husband were celebrating their first pregnancy after 6 yrs of marriage. But sadly Baby Theodore did not get to live very long here on earth. We packed up the house in 3 hours and headed to Ohio to be with them.

It was a very long 7 hour drive. Very.Long. with all 6 kids. We stayed at The Barn Inn one night. we had planned to go to my parents but supper, but it was really humid and they have a dog in the house. So we ended up ordering late night pizza to be delivered to our vacation house for dinner.

J and K had a beautiful service for baby Theodore. My kids think he must be playing with his uncle in Heaven.

We drove to Ohio Friday morning and returned home Saturday evening, because Bubbie was reacting to something in the vacation house. He was wheezing, coughing and generally irritable and miserable! The drive home was not nearly as torturous as the drive to Ohio. But by Sunday morning, 5 of my kids were sick with fevers, coughs and colds.

We regrouped and recovered. Then we celebrated birthdays. Bubbie turned 2. We made a dairy, egg and protein free chocolate cake that he loved. I made a smiley face with allergen free chocolate chips, he was quite delighted and ate all of the chocolate chips before anyone else got cake!

He loves to look at books and was quite happy with his collection of birthday books.

We tried some new hairstyles. She and I were both delighted with how these twists turned out!! She is tired of braids and straight hair... so this was a fun new style.

Then we had another birthday. This time it was gluten free cake with peanutbutter and honey icing. Lee's favorite!

For his birthday, he wanted to camp. But as we all know our family has really had to adjust to having a highly allergic child, so we decided to camp out back.

My landlords/next door neighbors have a little cook out area on the corner of the two properties. We got permission to use it for the weekend.

We put up the tents, made dinner in the charcoal grill. Because Bubbie is allergic to smoke.... We made dinner, pulled down the tents and dashed inside. Just as it started to pour down rain.
My amazing friend Ada had joined us for this birthday camp out. She knows how to make anything fun. She had brought a game and some glow in the dark toys.

We watched a movie and played lots of games. Ada and the kids slept in the living room. Sunday we had breakfast then played games all day long!! Once again life did not go as we had planned but the kids had a total blast and the birthday weekend was saved.

The last big thing we did was homeschool evals. I am so thankful for an evalautor that understands the importance of working with kids, the calling of homeschooling. She was so encouraging as I worried about the progress or lack of that I see with my kids.

We have another 2 weeks of craziness then school should slow down. Three of the kids had dental appointments. Two need extractions and sealants. So we get to make 4 more visits for those two kids, plus the other 4 kids need dental exams. Plus we have a big appointment coming up for Bubbie...

Monday, May 11, 2015

Food Issues

It started with formula. We tried the standard Good Start formula. It did not work well. We had lots of screaming and gas. We switched to Good Start Soothe, which worked but not great. So we switched to Alimentum. We tried soy in there at some point but that did not work at all.

So since he has been 6 months old, Bubbie has been on Alimentum. It continues to be his primary source of nutrition.

We started out trying the baby foods. We knew because of his digestive issues that we would need to be careful. So we tried one new food a week, 1/4 tsp on day one, 1/2 tsp on day 2 so on... 1/4 tsp of green beans, squash, peaches, peas and baby cereal all gave us hours of screaming. The kids begged me to stop feeding him.

It was a slow tedious process. We tried 4 foods per month on average, failing most of them. I spend an awful lot of money on expensive organic foods that he would eat 1/4 bite of and then never eat again. Sometime I would try a food then he would get sick on day 2-4, and we could never be sure that it wasn't just a virus.

My least favorite reaction was/is sleepless nights. When Bubbi had foods that caused him discomfort it was not unusual for him to wake 3-7 times a night. Many a night I saw every hour on the clock.

Currently his favorite foods are apples, carrots, pretzels, potatoes, lamb, strawberries, broccoli and watermelon. The only milk he can drink is coconut milk, but he is not a fan of that. The only meat he can eat is lamb. That is also his only source of protein at this point.

We discovered that he is allergic (IgE) to fish and peanuts. Thankfully so far it does not seem to contact based and the rest of us can still eat peanut butter as long as we are careful to make sure he doesn't eat it. He carries an epi pen for these allergies. Yes, I taught all of my kids how to use an epi pen and to know the signs of an allergic reaction.

We continue to try new foods. Some are great. Some like the sheep milk yogurt start a change reaction of symptoms that leave me stumped.

We did some allergy testing when he was really young. It showed no IgE allergies. We did skin testing and again no reactions. However, his allergist and GI feel that his complicated health is not going to fit into their mold. They both have told me that they feel they will learn from him. It is discouraging and encouraging to hear this from specialists.

We did the breath test (this was a painful tearfilled hours of torture for him and me!) and discovered that he is fructose intolerant. But once again it is not typical because he can eat some fruits. Apples are normally a big trigger for fructose intolerance, yet it is his favorite food.

He is def lactose intolerant. We do not need any tests to determine that! We tried a toddler formula for him. But he reacted pretty severely to that.

It gets harder as he gets older. He wants to eat what we are eating. He loves to eat. I have from day 1 encouraged him to try new and different textures etc.. some of the food choices have been based on texture not nutritional value because I wanted to avoid eating sensory issues.

Some days he throws a fit because he wants to eat what we are eating. Some days he just sits quietly as we eat. That breaks a momma's heart. We try to find special treats that he can eat. It takes work and creativity. His meals must always be cooked separately. He is thrilled for his cup of ice at Mcd's when the rest of us get burgers and fries. He loves his carrots and broccoli when we eat chinese.

He is generally a very sweet child with a kind and gentle heart. Except when he as foods that make him feel miserable, then he becomes an angry, aggressive, whiney, clingy, mean child. He hits, kicks, screams and doesn't sleep. We can only imagine how miserable he feels.

I have joined several facebook support groups. I have learned so much from other moms. There are several other possible dx and by joining fb groups focused on those issues, I have been able to determine what he needs.

People look at my pudgy toddler and are shocked that he eats only 10 or so foods. Generally people are respectful and don't feed him. Everyone has advise and ideas.

I have tried so many things and read so much info. Sometimes we just take a break. We stop all foods. We just give him his bottle. We all just need a break from food. Then we find motivation again and try again.

When we leave the house we must always carry an epi pen, an inhalor, asthma meds, benadryl and whatever food he will need. We get a lot of flack for still allowing him to have his bottle. He can drink from a cup. He can eat table food. But the bottle is his source of nutrition.

Bottomline, this kid is complicated. We have had to alter our entire lives to adapt to his needs. My big kids have made sacrifices for his benefit. They have learned so much about compassion and sacrifice. They know the signs of an asthma attack, allergic food reaction, GI reaction, and are extremely protective of him. They are extremely protective of him and are not afraid to speak up for his needs in group environments or at sitters. Because forever families are forever and they love no matter what.