Geez can life get any more hectic???

So here it is the middle of June already...Lilly is doing well on the diet and the Neocate. We finally got everything straightened out with WIC. I called Fry's and sure enough they had the formula for me the next day :-D They are very helpful, and they carry a lot of Gluten free stuff to. Dr. Khan finally called me back to give me the results of Lilly's bloodwork. Unsurprisingly she came back not highly allergic to any food she was tested for. He said that doesn't mean she isn't allergic or intolerant. She's been doing well, so he advised us to start giving her new things once a week. Yesterday we tried eggs, and sure enough about 15 minutes later here came the gas and a diape rful! So eggs are out for now. He advised that we can get her shots now, but they have to be spaced out since he is afraid that she could have a reaction. Her immunoglobin levels came back low, and she is anemic, which he said happens to people who are allergic. So for now it's as much formula as she will drink and whatever solids she can tolerate. Other than that stuff, she's doing really well...crawling fast as ever, cruising anything she can hang on to, and taking a few steps by herself.

Shelby is doing well to. Summer is in full swing, but she's doing homeschool packets over the summer to get a jump start on 5th grade. She's also doing the reading program with the library. I am so proud of the young lady she is becoming. She's going to visit her Aunt and Dad soon in Kentucky and she's really looking forward to the trip.

So that's about it for updates on the kiddos...other than that we are gearing up for the move to Alaska. Lilly and I passed the EFMP screening, Shelby however had to be enrolled due to asthma. We have attended the levy briefing, and I felt like I learned a lot from it and am very glad I went. Now we are waiting on a paper from Shelby's dad so that we can get our passports, since both biological parents have to be there to sign and we are across the country from each other, he has to sign and get it notarized that he approves. Ahh...now on to the travel part. It's a 3800 mile trip. The ferry is booked until the end of September...so it's looking like we either have to drive the whole way, or fly and be without a car when we get there....still don't know what we are going to do...

Lilly's Bloodwork....

So today we finally completed Lilly's bloodwork, and they gave me a tub to bring home for a stool sample. I of course dreaded the bloodwork more than Lilly. But the guy who did it was really good, he called someone else from the back to help me hold her, and he got her on the first try. 5 vials later her poor little vein was starting to jump around, but it held out so we could get the last vial. She's doing really well. However, over the weekend she got a hold of another little one's girl scout cookie, and she had very loose stools for the next 3 diapers, and a tummy ache. We have been giving her just things we know work (all non processed meats, carrots, green beans, gluten free pasta, and the organic brown rice pasta). For now this is what works and is what we will continue to do.

On a brighter note, Dustin will FINALLY be home on Friday!! We decided against going to Ft. Bliss for graduation, since they won't let him ride home with us...so we are planning a little party for him! I know the girls will be excited to have Daddy back at home and so will I!

School for me is going well! I'm excited and read my books every chance I get. I am finishing up training for an at home job today. So I'm excited about that to...here in the next couple of weeks things are going to get really busy, so I am trying to get ahead while I can!

And so it begins....

After meeting a wonderful new friend yesterday, I have decided to start my own blog. I met her through a resource here on post and I will be forever THANKFUL!! We were brought together by our children! For those of you who do not know, Lillypad has been pretty sick. If you looked at her you wouldn't know it, but everything has run straight through her for a month. She has had an awful diaper rash, hasn't been eating well, and has weighed the same amount for 3 months! Needless to say, we have been to the Doctor many times, only to be told the same thing, or given a different diaper rash cream, but FINALLY they put in a referral for a Pediatric GI Specialist up in Tucson.
We had our first appointment on Monday! (THANK YOU to the "one" and she knows who she is that helped me get our referral pushed through, and reminded me that I don't have to take her to the doctor on the referral, if I can find one who accepts our insurance and can get us in sooner!) It was an all day appointment it seemed like. We started with an hour and a half wait in the exam room, he is a pretty busy guy. The wait didn't really bother us though, we just wanted an answer. When he came in he had a smile on his face and introduced himself to me and the girls, excellent bedside manner! We went over her symptoms and family history. She had only had pedialyte, but still managed to "go" 3 times while we were in there. He checked her over and ordered testing. She will be tested for cystic fibrosis, celiac disease, and food allergies. It is scary, but I know there must be a logical answer for all the feeding problems she has had since birth. He also prescribed her to be on Neocate formula until further notice. From what I understand since she can't tolerate any infant formulas, whole milk, lactaid, or silk (soy) milk this is our best option to give her "gut" time to heal. We decide that he will call in 2-3 weeks to check on her, but if I have any problems with getting the formula paid for to let him know and his office will help me get it covered by the insurance. I leave the office satisfied and excited that she might actually be able to have something besides pedialyte and Gaterade!
So off we go to the pharmacy...1st I try the hospital pharmacy just as he recommends, they inform me that they do not have a contract with our insurance company. So off we go to Walgreens...all I can say is rude! They wouldn't even help me, didn't even know what I was talking about...then we are off to CVS after an hour at the last place, they were much more helpful, but still said the insurance wouldn't cover it because it was over the counter, yet you have to have a prescription to order it and it is only to be used under strict supervision of a doctor. They say sure we can order it for you but it will be $256.00 per case!! WOW, excuse me could you please repeat that...I left crying, and on the phone with the insurance company who told me the same thing. So I left Tucson to come home with 2 tired kids, a tired MIL, and one angry mommy!!! I just felt like again my concerns for Lillypads health were being dismissed. Oh and to beat it all, it was my birthday...and in case your wondering Dustin is gone to school....
NEXT DAY *May 19th, 09*
I am up and on the phone by 7 am. FINALLY I get a phone call back from WIC and explain
the situation. I was under the impression that after 12 months, we couldn't get formula anymore even with a prescription, but I was wrong...and I think this is the first time that I have ever been glad I was wrong!! She told me that all I needed was a Doctors note faxed in to her office and the prescription. She did tell me that I needed to find a way to try it for the week and if Lillypad does ok they will pay for it!! WOOHOO!! Thank God for answered prayers! Then she told me that she would put me in contact with someone who might be able to help me since Neocate can't be bought by the can. She did and I am forever THANKFUL!!!! I went and visited with one of the most inspirational people I have ever met! When I felt so down, and scared about Lillypad, she's given me hope! She said some "liquid gold" with us, some brown rice organic pasta (since Lillypad is on a strict diet), and some very helpful info on food allergies! Her kiddos were so adorable, and Lillypad got to play with someone her own size for once!!! So we started it, and of course she hates the taste, but I put a little pedialyte in it, and she's ok with it! She had about 10 oz of it total yesterday, and some green beans, and no more problems. Oh and dinner consisted of 1/4 cup diced plain chicken breast, 1/4 cup plain brown rice, and 1/4 cup diced green beans. She slept all night for the first time in a LONG, LONG time!!! I am convinced this stuff is the answer to all our prayers! But we will have to see what the rest of the week has in store...
*MAY 20, 2009*
I woke up to a happy baby this morning!! Lillypad and Shelb played before school this morning, and had a good time! I love watching Shelb play with her, she makes an excellent big sister (and little mommy!). After we took Shelb to school, I made breakfast for the baby. She had stage 2 peaches, and some organic brown rice baby cereal (checked the label and no soy, dairy, wheat, or gluten YAY!). She also had about 2 oz. of the Neocate/Gaterade mix. And no dirty diaper yet!! I am sooo excited, yet cautious. I really hope we are going to get some answers!