Wednesday, April 14, 2010

Update

Just a quick update.
Homeschooling is going well. Sully seems to be learning so I guess I am doing something right! I never understood the difficulty of homeschooling until now but I am enjoying all the time we have together and seeing him learn new things and be excited to learn. It truely is amazing. Freedom in our schedule is also a bonus and we are enjoying these beautiful spring days!


On to the SCD diet- early this year, actually January 19, 2010 we put into place a specific carbohydrate diet for the boys and I. This diet is quite complex but can have amazing results. Up until January the boys were on Neocate Jr. Formula to keep weight and keep them going. We had previously done a GFCF diet as well with some improvement. For some reason their copper levels were increasing and the only source of copper we could find was the neocate. So Cody and I decided that this complex specific carbohydrate diet would be worth trying for them. We removed the formula and went on the this very difficult, time consuming diet of cooked organic fruits, vegetables and meats. No sugars, carbs or starches are allowed! ( see www.pecanbread.com for more info) This particular SCD diet is also called a healing diet and recommended for any bowel disorder. We thought if we could do with food what formula has done for years maybe we could ween them off formula. By January Lochlan's bowel issues were continuing to get worse his belly becoming more and more distended. We met with Dr. Zapata the head of the children's GI dept at Children's Hospital and got his input on the diet and Lochlan. He told us that if he really needed to be on formula and if he really had malabsorption and maldigestive issues we would know quickly. Well, within 2 monthes we have had 3 ER trips and he has had more testing than I could have ever imagined.
After an upper and lower endoscopy, biopsies, many blood and urine tests still no answers. His GI tract just cannot simply digest solid food and he also has a severe dysmotility issue which makes it very difficult for him to poop.






After 1 1/2 mo of suffering the docter decided Lochlan must go back on formula as the stomach distention was starting to cause issues with his breathing. He has referred us to Kansas City to see another specialist (our appt is in june) and in the mean time he continues to run tests. For now as long as we limit his solid food intake we can help him endure the wait. Currently he is on 30 oz. of peptamen jr. and about 1-2 cups (total amount) solid food per day, if any. He is quite the trooper and has even commented on how his tummy is not too big now.
(left:Before formula only)
(below: after formula only diet)
He is also on a full cap of miralax every day to help the dysmotility. We have no idea what will come with this specialist in June we just pray that someday he would be off the formula and we could help his digestive system begin to work properly.
In January Lochlan turned 4!! I can't believe my baby is now 4! We had a great party at the bowling alley and celebrated his cousin Carter's 5th birthday as well. They all had a great time and even daddy had a blast.


The boys have successfully completed their first soccer clinic at the YMCA and both have decided they might be soccer players when they are big. It was even more fun that their cousins Jazlyn and Kyan did the clinic with them.


Sully has started AWANA and is loving every minute of it. He is doing very well, making friends and earning jewels. He has also started swimming lessons and with the first lesson was promoted to the next level. He is quite the fish and it takes a small miracle to get him out of the water. One would think he could not breath out of the water if they witnessed the event. We are soooo very proud of him and it takes my breath away every day how much he is growing up and becoming more and more independent.

Lochlan is still attending preschool and really taking a liking to the vice principal's daughter, who is in his class. He talks about her often and they can be seen holding hands on a regular basis. He too is growing way to fast as well. He has taking a liking to his bike and has learned to pedal with training wheels. He too, like Sully, had this goal at OT and all his hard work paid off.
Thanks to Aunt Shana for the great suit! You have created Tie monsters!!! Lochlan would sleep in his if he could.