Sunday, March 30, 2008

Abigail on Angel One

This is a picture of Abigail from Angel One on the way to Arkansas Children's Hospital on 3-24-08.

Saturday, March 29, 2008

The Joy's of a Semi-Private Room

Semi-private really means that we are going to stick you in a room with a complete stranger whose poor child is still screaming at 1:12am preventing anyone from getting any sleep. Or it is because the mother let her seven month old fall out of her crib three feet off the ground and land on a concrete floor! They put you in these rooms with these situations and separate you with a piece of material hanging from the ceiling...real private! I was telling my momma that I didn't want a roommate tonight because Abigail had her bronchoscopy today and I wanted her to be able to rest. After I told her this she prayed over the phone with me that we would have a quite room to ourselves. I kid you not, the second she said, "Amen" the nurse came in to inform us that they were bringing up a two year old. God's plans are far better than our plans could ever be. Lying in the bed next to Abigail's bed is the most beautiful little boy named Elijah who has Downs Syndrome. That isn't even the best part! They are a nice christian family, and even though he is still screaming at 2am I don't mind because God has reminded me that He is in control and He has a purpose for everything. He has brought Elijah's family and Abigail's family together in this place for a reason. Let me also tell you that He allowed Abigail to rest even throughout the screaming. What an AWESOME God we serve!!!

Friday, March 21, 2008

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.

Thursday, March 20, 2008

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!!

Saturday, March 15, 2008

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. :)

Friday, March 14, 2008

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 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.

Wednesday, March 12, 2008

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."

Tuesday, March 11, 2008

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.

Saturday, March 8, 2008

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!

Thursday, March 6, 2008

Chocolate or Tropical...

I have officially reached the point of exhaustion both mentally and physically! I spent my entire day yesterday trying, well actually begging and pleading with my 15 month old to drink her new formula. After only drinking 10oz. of her minimally required 28oz., Ross gave her the tropical flavored milk. She drank it reluctantly, but never the less she drank 6oz. We were avoiding giving her the tropical flavored milk because it contains citric acid and we were afraid that it would irritate her, so after special-ordering 20 cans of the chocolate flavor we had to call back this morning and see if they could over-night the tropical flavor. I know that I am rambling, and rightfully so since she screamed for 41/2 hours last night!!!

Tuesday, March 4, 2008

Scopes, scopes and more scopes!

Abigail made it through EGD and Sigmoidoscopy number 3 with flying colors, and we are back home after staying the weekend at Arkansas Children's Hospital. Her doctor took several biopsies of both her esophagus and her intestines; we should have the results in about a week. There were several red nodules inside of her colon which we suspect are from increased numbers of eosinophils. They FINALLY changed her formula to Neocate Junior, and we are hoping that it will help with the diarrhea. Abigail is such a trooper and demonstrates the incredible strength that God has given her.

Blogging for the first time...

I hope that I will be able to keep up with this during the midst of all of life's ups and downs.