I received a phone call from Dr. Putnum today. He said that Abigail's scope looked great! There were only minimal eosinophils; nothing to prevent food trials. However, because of Abigail's status with this disease and her age, he suggested that we wait another six months to a year to begin trialing foods. This is because most of the children like Abigail fail their food trials, especially at her age. Another big reason we are waiting is because Abigail shows little to no interest in food. She is curious about what certain foods are, but other than asking what it is and if you eat it, she shows no desires to consume it herself. If and when she shows an interest and we cannot put her off any longer, then we begin the trials. Unless of coarse, we reach close to the year mark at which point we will begin them either way. When we do begin, we will start with grapes. She will have to eat them for 3 months and then be re-scoped. Although this was a bit disappointing, I agree that this is in her best interest. I would hate to set her up for failure by beginning too soon. Plus, the Lord has perfect timing! Having a high-risk pregnany and a potentially very sick two year old would not be a good thing. By the time she is ready to begin trials, the baby will have already been born and we will all be in a better position to handle possible mishaps with the foods. Okay, I think I have rambled long enough. I will post Ross' results as soon as we have them.
Wednesday, June 17, 2009
Sunday, June 14, 2009
We are all home together as a "whole" family again. I do not like it when we are apart, but it makes it that much sweeter when we are together. The trip home was good but long. Apparently if you are pregnant and you think you are drinking enough fluids, you should drink more. I am pretty sure that I got slightly dehydrated, making the muscles in my legs hurt when applying pressure or flexing my feet. For two days I hobbled around like Frankenstein...a sight to see I'm sure! Needless to say the trip was pretty uncomfortable. I think I have been drinking my weight in water since we have been home and that seems to be helping some. All-in-all everything went well and we all all happy to be home!
Posted by Ross and Lisa Green at 8:30 AM
Friday, June 12, 2009
After an hour in recovery without us by her side, the aid of oxygen, and a little girl who did not want to wake up we got a sigh of relief. They gave Abigail a new medication to help with the nausea, and it knocked her out. She was fine, just a little sleeper than normal. Recovery usually takes about 20 minutes before we get to see her, so having to wait an hour was quite nerve-racking. Though, I would gladly wait an hour in order to prevent the vomiting that occurred last time. The medication worked and next time we will be prepared to wait longer before we see her. ;) Dr. Putnum said that her esophagus looked really good, and hopefully we will begin a food trial soon. We should have her pathology report next week. If her scope is clear and she begins a food trial then she will be scoped sometime in September.
HAPPY BIRTHDAY ROSS!!! The girls made daddy birthday cards before we left and he got to read them this morning...it was really sweet having them. They also called this morning to sing him "Happy Birthday". They actually beat me to it! Ross got a new grill, grilling cookbook, and last but not least he ate STEAK (for the first time in 3 1/2 months) for his birthday. It was a crazy birthday, but totally fitting for our family! :)
Thursday, June 11, 2009
Ross' scope went well. The doc said that he has scarring which may not ever go away, but visually there were some subtle improvements. We are all hoping and praying for clear pathology results. We will not know any real results until those pathology reports come in, but for now he can begin a beef trial. He will continue the formula diet as well until he has a well-rounded diet; this will take some time to develop. If his scope is indeed clean then he can continue the beef trial and add a new food about every 3-4 weeks; tracking his symptoms. He will do this until he has four foods and then will be re-scoped.
Abigail's scope is tomorrow at 12:20. We have to be there at 11 am and she cannot eat past 4:30 am. Please pray for her safety during the scope, that her last feeding at 4 am will sustain her until after the scope, and that her results also come back clear.
Wednesday, June 10, 2009
I have decided that if you have children, your house should come with hotel darkening curtains (fashionable I know) and highway noise because Abigail has slept in every morning we have been here. Of coarse, we have to be up early in the morning for Ross' scope, but we have enjoyed getting some extra rest the past two mornings. We have to be at the office at 6:45 in the morning and his scope will be sometime between 7 and 7:30. Today was uneventful. We rested most of the day with a quick trip to the mall, and then Ross began his prep for the scope at 4 pm. I will post an update after the scope tomorrow.
Tuesday, June 9, 2009
Abigail's appointment with the Orthopedist went really well today. The doctor spent at least 45 minutes with us drawing pictures and explaining everything to us. Abigail does have a twist in her tibia (the bone from the knee to the ankle) on the left leg, but she said that it is relatively mild and she expects it to correct itself as she ages. Now, the hips/femur are a different story. Her femur is definitely twisted inward in the hip socket. This is not something that will correct itself, but as long as she is functioning normally surgery will not be necessary. Even if we see a need for surgery it would not be done until she is 8 years old. At this point the doctor doesn't anticipate having to do surgery unless she doesn't progessly get a little better or if she is made fun of incessantly; becoming severely self-conscience about it. Her comment was she would rather see a child have a surgical scar verses a psychological scar. I was really impressed with this doctor and glad we got a third opinion. Having these answers and a doctor that was willing to sit down with us was an answer to prayer. So for now we wait, see the doctor in a year, and plan on having a sweet little girl with a little different walk. Thank you all for the prayers...they were answered.
We arrived in Cincinnati about 6:00 last night. We had a good, but very long trip. Sorry I didn't let everyone know that we had arrived last night, but by the time we got here all I wanted to do was get in bed and go to sleep! ;) I was ordered by Dr. P to get out and walk every few hours, so it made the trip longer than usual. Of coarse, I cannot complain because Abigail was great!! Abigail has an orthopedic appointment at 12:20 (11:20 your time). I will let everyone know how that went later this evening. We also have plans with Mike, Mona, and Conner around 5:30 this evening. We are so blessed that the Lord has brought them into our lives. It makes these trips more enjoyable.
Posted by Ross and Lisa Green at 9:23 AM
Tuesday, June 2, 2009
The following is a copy of the update letter we mailed out concerning Ross and Abigail's progress and trip to Cincinnati. I posted a copy just in case some of you didn't receive a copy by mail.
Beloved Family and Friends,
Ross and I want to thank each of you for your support over the past 17 months. We have seen the face of Jesus through every answered prayer, word of encouragement, and financial support each of you have provided our family with. Our trip to Cincinnati was well worth the anguish, hard work, and patience it took to get there. I have honestly never seen a more educated and passionate team of doctors. They are dedicated to finding the best treatment option, and hopefully someday a cure for Eosinophilic Gastrointestinal Disorders.
Dr. Putnam (Gastroenterologist) performed Abigail’s initial scope in August, and said that her esophagus actually looked very good; however, the pathology report stated that the disease was still prevalent. Since there were still eosinophils present in her esophagus, Dr. Putnum decided to omit bananas from her diet. Her diet now consists of Neocate Junior only; a hypoallergenic elemental formula. In order to protect her oral motor functions, she is allowed to eat Smarties candy, Pixy Stix, and ice chips.
We also discovered in August, that Ross has Eosinophilic Esophagitis. His digestive track was in such terrible shape that he had to begin a formula only diet on March 1. The Neocate Jr. formula that he is on cost approximately $1200 per month, and the Lord has graciously provided $8440 worth of formula, free of charge from other families in the same situation. Praise God!! He is Jehovah-Jireh, the Lord our Provider! Ross is doing well. He has lost 52 pounds to date, and feels better than he ever has. Although there are days he “wishes” for food, I have never once heard him complain about drinking the formula. He and Abigail have shown unexplainable strength throughout this whole process.
We are currently awaiting our next trip to Cincinnati. We will be there from June 9 through June 13. It is our prayer that their eosinophil counts will be zero so that they can begin food trials. This has been our desire for quite some time; please pray that the Lord will bless the hard work and sacrifices made, so we can see them both eating food again.
Thank you again for all of your support, and most of all for the continued prayers. We could not have done all of this without you all nor could we have done it without our heavenly Father’s help. He has proven His sufficiency and faithfulness from the beginning. We have truly found joy in the midst of Eosinophilic Esophagitis, and look forward to seeing what the Lord has in store for our family and this disease. We will continue keeping everyone posted on our progress and hopefully the next letter will include foods! We love you all.
Ross and Lisa
And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.
Posted by Ross and Lisa Green at 3:27 PM
Monday, June 1, 2009
I have not fallen off the face of the earth; just been battling morning sickness and exhaustion. I haven't found the extra energy to post lately, but I decided I would catch everyone up before we leave for Cincinnati on Monday. This is Mary Grace's last week of school. Her last day is Thursday, and I don't think she is looking forward to it. She loves school; it helps that she had a wonderful teacher. I can't believe I will have a second grader and a kindergartener next year! Where does the time go?
Softball is officially over for us. Our little Lollipop Girls had a great season; winning ten out of twelve games. Mary Grace will be moving up to the pitching machine next year, and Hannah will continue in Tee Ball. It was fun watching Hannah progress throughout the season; and I cannot wait to have the four older girls move up together next season.
Abigail tested out of Physical Therapy a little over a week ago. This is huge because when she started at 6 months of age she wasn't rolling over or sitting up; she just flopped over our arms like a little ragdoll. She is now running, jumping, and doing most everything that a two year old should be doing. She will also be having a speech evaluation this week which I am fairly certain she will pass as well. She has been in therapy for the past 2 years and I'm not quite sure what it will feel like not having that as part of our schedule. Thank you Mrs. Alissa, Mrs. Heidi, and Mr. Daryl for all of your hard work! It has paid off.
Ross has been doing really well. He is feeling great, and as a bonus to drinking nothing but formula for the past three months has lost 55 pounds. He is anxiously awaiting his scope next week so that he can have that steak he has been dreaming about. Beef will be his first food trial...hence the steak ;).
I am doing well, and the baby is great. We heard the heartbeat (much to Dr. P's surprise) at 9 weeks. We have a fast little heart rate of 170. My blood pressure has already shot up so I have started my bp medicine. With the meds, my blood pressure does well and will most likely do so until the last trimester.
Wow, that was a lot. That's what happens when I slack on my blogging!! Well, this week will be busy with doctor's appointments and packing. Hope you all have a wonderful week, and I we promise to keep everyone posted while we are in Cincy.
Posted by Ross and Lisa Green at 5:09 PM