Yesterday Harper and Nora both had colonoscopies - a routine (albeit uncomfortable) procedure for most adults, but a very serious and potentially dangerous procedure for two little toddlers. Thankfully Nora is much bigger then she was at her last one (I realized yesterday that she was smaller then Rosie, a 4 month old baby), so it wasn't as traumatic for her this time. As for adults, the prep is the worst part for the kiddos. With Harper it was easy to explain to her that the doctor needs to look inside her tummy, so it needs to be empty. She wasn't exactly happy about not eating for 24 hours, but she understood. Nora, on the other hand, was a nightmare. The girl eats non-stop on any normal day, and has figured out how to open the door to the pantry, so trying to keep food away from her was a challenge - a very sad challenge. She definitely did not understand why we were starving her.
The morning of the appointment the girls also had to stop drinking (except for another dose of the magnesium citrate, which I literally had to force down Nora's throat). Tom took Rosie to Melani's house while I tried to hold down the fort with two hungry, tired, grumpy little girls. To top it off I had to give them both an enema. Have you ever given an enema to a toddler? I won't even mention how many I've done. There is a lot of screaming, crying, holding down, promising prizes, and a LOT of poop. The whole ordeal is quite disturbing.
Once we got to the hospital Harper decided to stop being so understanding - she was very thirsty and begging for a drink. Thankfully we were at a children's hospital, so they had a TV, DVD player and Toy Story on hand. Harper was quite content, so we got Nora prepped with her IV and I took her into the procedure room. For the third time in her very short life I held her while she was put to sleep. An hour later Dr. Pickens came out with her results. The wonderful news was that her small intestine looked great! Last year it was so inflamed there were patches of celia completely missing from her small intestine, and her stomach was so sensitive that it starting bleeding when the scope bumped the side. Today it looks completely normal, so we are very happy about that. Her large intestine, on the other hand, looks yucky. Last year it was inflamed, but not to the naked eye - we had to go off of biopsy results. Today there are large patches of open ulcers, and the left side was a very pale pink, almost white color.
Now it was Harper's turn, and she was very upset that she was going to be asleep while they looked in her tummy - she wanted to see it, too! So we promised her pictures and Tom took her into the procedure room while I stayed with Nora. It took Nora a while to wake up all the way, but once she did she was thrilled to get a drink of apple juice and some fishy crackers. Dr. Pickens came back with Harper's results after about an hour, and there was no good news. Last year Harper's small intestine wasn't even affected, and today it is very inflamed with several large ulcers, particularly around the bottom of the stomach where it opens to the small intestine. Last year her large intestine was covered in ulcers, and today it is the same. The ulcers in her large intestine look very different then the ones in her small intestine - they are very small and white in color. Dr. Pickens described them as "pin prick ulcers", and he's quite confused about them. They don't look like "typical" Crohns' ulcers (like her small intestine ulcers, and Nora's large intestine ulcers), but I think we can agree that nothing about these girls is "typical". Along with the regular blood work (blood counts, liver functions, iron levels, vitamin D levels, etc.), Harper also had some blood drawn for a Nod2/Card 15 mutation test. This is a genetic test that will look at the specific gene that is associated with Crohn's to see if it is mutated. If it is, Tom and I will do some genetic testing that will help determine Rosie's chances of also having Crohn's. We will hear back on this test in a few weeks, and both girls' biopsies and other blood work on Wednesday.
Wednesday will also be the day that we start their methotrexate. This is a once weekly injection that I will do here at home that will hopefully do double duty and work on their Crohn's and their arthritis. It takes about 6-8 weeks to really take affect, so for the next few months they'll be continuing their regular medications in addition to the methotrexate, but our hope is to eventually be on just the injections. Not really looking forward to giving shots to the girls, but when I explained to Harper that it would help her legs feel better she was very excited. She asked if she would be able to do gymnastics without her legs hurting, and it broke my heart. I really hope these girls get some relief soon.
Thank you all for your thoughts, prayers, concern and love for my girls. We so appreciate our wonderful friends and family!
