Eosinophilic Support

If anyone is interested, I have started an eosinophilic disorders support blog. It has information about eosinophilic diorders, helpful links, and Abigail's story. I am doing this in an effort to inform more people about this incurable disease and also to let others suffering from it know that they are not alone. The link is under the "Friend" category on the right-side of this page; listed as Living With Esoinophilic Disorders.

It's Not Always Smiles and Giggles....

BUT TODAY IT IS!!!! Abigail has been having a GREAT week! Her daddy commented, "You sure are full of smiles today," and for our 15 month old, that is a rare treat. She has been quite full of herself lately, squealing at the top of her lungs! It is so nice to "see" her feeling better. I say "see" because she finally feels like playing with Mary Grace and Hannah, and they all enjoy each others company. As I am typing, Abigail is playing in the kitchen, stacking all of the plastic cups together in the Lazy Susan. If fact, all three girls are in the kitchen playing. Hannah is coloring at the table, and M.G. is doing something? at the bar. I am going to go join in on the fun!!

One Proud Momma

I have been teaching Abigail some sign language because she doesn't talk much, and today she signed her first word...MORE!!! I am so excited, it's like she is saying her first word. She brought me her empty sippy cup and I asked her if she wanted more. After I said the word "more", she signed it!! She can have as much formula as she wants. :)

If it isn't one child, it's another!

This has been one very long and tiresome day. Hannah woke me up at 4:00 this morning complaining of a stomachache. So, I rolled myself out of bed and took her to potty. She then got a drink of water, got back in bed, and I scratched her back for a minute. Everything seemed fine until about 6am when she crawled into be with me. She tossed and turned still complaining of a belly ache. She drank an entire bottle of water and a couple of bites of banana; keeping this all down and running a low grade fever I started getting a little concerned. By 10am she is crying uncontrollably so I piled everyone into the car and to the Pediatric Clinic we went. We saw Dr. Davis (whom I liked a lot) and after ruling everything else out, he determined that it was either her appendix or a virus. Her pain wasn't strong enough to warrant a CT scan at this point so he sent us home with a few pointers. At 3:45 she wasn't getting any better and her symptoms were beginning to change, so I called him back. At this point he ordered the CT. After sticking Hannah 3 times they were finally successful at getting the IV in. Poor girl!!! She is so tough though!! Luckily everything looked okay, so for now she gets to keep her appendix. It is 9:20pm and Ross is on his way to take my little sister home (she stayed here and watched the other two girls) and probably won't be home until 10. 4am to 10pm without a break...in the professional world isn't that illegal??? Oh, wait...that's why it's called MOTHERHOOD! :) and I wouldn't change a minute of it.

The Perfect Quote

"If you can't make it better, you can laugh at it."

That pretty much sums up our life right now. We can't make Abigail better, but we can keep on laughing! Everyone prays that God will heal Abigail; in part, I think because that is what we have been taught and because no one wants to see a child sick and in pain. As I pray and ask the Lord to pray through me giving me the words He would have me pray, they have never been that He would heal her. I am not sure what her purpose here on earth is, but I know that we have encountered and befriended people we would never have met had she not had this disease. Abigail is proof to me that nothing is by chance. The Lord directs our paths in everything we do: in the places that we live, in the hospital rooms by the sick child and their family next to us, in the doctors that He chooses for us, in the grocery store by the person we are in line next to, etc. This situation in life has made me more aware of my surroundings and the people that He places before me. My prayer for Abigail isn't that God will heal her, but that she and this disease will bring glory to God. Maybe at some point God will lay upon my heart for Him to heal her, and maybe for others He already has, but my goal is to aid her in bringing Him all the glory. Jesus said it best in John, chapter 11 verse 4, He said, "This sickness is not unto death, but for the glory of God, that the Son of God be glorified through it."

Biopsy Results

I spoke with Dr. O'Connor yesterday and Abigail did infact have an increased number of eosinophils in her colon...surprize, surprize! The eosinophilia numbers also increased from 10.7% to 12.7% in her blood count. Abigail's diagnosis has changed from eosinophilic esophagitis to eosinophilic gastroenteritis with eosinophilic colitis. This basically means that she can have eosinophils any where in the GI tract. This is all so very frustrating because if the allergist at ACH had listened to me when we took her back for her 2 week check-up we wouldn't be in this mess. I tried telling them that I thought she was having a problem with the Elecare Vanilla, but nooo, I am just her mother!! On a more positive note, she is still progressing each day with the toleration of her new formula. She even had a few canned pear slices last night.

Every Ounce Makes a Difference

Abigail has been slowly drinking a few more ounces each day. We aren't back to her minimum 28oz., but she is adding a few ounces each day. An additional 1 to 2 ounces per day seems minimal until you are faced with the task of trying to get your child to eat. These gradual additions are huge!! Those 1 to 2 ounces are the difference between a feeding tube and "by mouth" feedings. I'll take a slow uphill climb any day to avoid placing that feeding tube back down her nose again!