Been there, done that, now what?

Its a tough week in the Cole household. After almost a year of testing we've finally made some headway as far as Phill's mysterious illness is concerned. Months of testing and many specialists later we have a preliminary diagnosis. Acute Multiple Protein Allergy. Say what? Thats right, we've heard this before! I feel like I'm at Tufts all over again leaning over Asher's clean room crib, hearing this diagnosis and feeling absolutely confused, devastated, and totally helpless. A year! It took a year.... this information could have helped us take care of our son, help with my prenatal care, prepare us for the caos that ensued right after Asher's birth. Why? Because this type of allergy is actually a genetic problem with the immune system that is almost always passed along if both parents have food allergies and one of those parents has an Acute Multiple Protein Allergy. And of course, it figures.....I have a couple food allergies. And the icing on the cake....its rare, but we're almost garranteed to pass it along to another child. So now for more testing, gene mapping and food trials for Phill and Asher, and for me so we can have all the information we need to make sure that Asher's quality of life isn't affected.

Its funny that Phill has been able to live his whole life with this illness and never have the symptoms that Asher had. I mean he had symptoms. His poor mother listened to him screaming as a baby 23 hours out of the day. Of course the Dr's told it was colic....don't worry about it! Poor Dianne, I really can't imagine not having answers and feeling that kind of helpless. And then of course, there were the awful rashes....dermatologist told them it was exzema....so they tried all sorts of creams and alternatives to soap...that made no difference. And the icicing....the behavior problems....which is what happens when children are always in pain, but are so used to that pain, they don't actually recognize it as pain anymore.

I guess they should consider themselves lucky that he didn't stop breathing. But I really don't think its lucky to suffer a whole childhood thinking...."what the hell is wrong with my kid!?!" and of course "Am I a bad boy?" I'm just grateful I wasn't a mom in 1981 and that my child was born when Doctors didn't brush aside these things and specialists know more about rare and complicated diseases.

A Tale of Five Sisters

Five Sisters, Two Families....30 Something Years Later

Growing up I always knew that my birth father had other children. They grew up in a different state and were a generation older than us. So they were adults when we were children...having children of their own, who are now close to our age. So we didn't get to know them and never got an oppertunity to meet them....until now.

How strange that at almost 30 years old I am getting the oppertunity to meet "new" siblings! About a month ago, Michelle and I took a trip a couple states over to visit with our oldest sister Carol. We were a little nervous, but she was so nice and warm....I really couldn't believe after all these years how easy this visit was. She told us all about our other sisters and their families and the few things she had known about us as children.

Shortly after visiting with Carol, we were contacted by our sister Kelly, who was so excited to get to know us and wanted to meet us too. So yesterday Michelle, Kylee, Asher, and I got into the car and headed out for dinner with Two sisters and a neice (who is just a couple years younger than I am)

What strikes me the most, is how much you can like people that you just met! Kelly and Elaine are both really warm and bubbly people, it would be hard to not feel fondness for them. The other most striking thought was how crazy it feels to sit around a table with girls you just met and realise how much you all look alike! Specifically Elaine and Myself.

Elaine's daughter brought pictures of them all throughout the years and if you took a picture of me as a teenager and one of Elaine....you might not be able to tell us apart....its like twin sisters separated by a generation : )

We shared a meal and chatted for going on three hours about our lives, in fact we didn't even touch on the one thing we've always shared until right before it was time to go....our father. Going into it I was worried that it would be the only thing we would be able to talk about....but it turns out we have a lot more in common than I thought we would.

Its so great after all these years to meet the other "moffett girls" I lowercased the name because I don't think any of us truly own being a moffett anymore. I used to hate the name, but now I don't...because its the thing that links me to these other women : )

Oh Happy Day!

Asher Benjamin turned six months old yesterday! Seems a little crazy that hes been here for half a year already! Its also a little sad to think of how quickly it passed by and how fast the next six months will fly...soon we'll have a one year old!

Asher is now crawling everywhere! We have been baby gate shopping so we can block off the second living room and make it a snack free zone. It has been a little stressful following Kylee around to make sure shes not dropping animal crackers everywhere!

Asher LOVES Kylee. He wants to do everything with her and everything like her! So now he has a sippy cup, so they can watch Elmo together and have a juice cup together! He loves it. Of course Asher's cup has pedialyte in it....but he thinks they are enjoying the same thing!

Sometimes during dinner, we put them in their high chairs next to each other....and they laugh the whole dinner....its like they are little best friends! She can make him laugh when hes crying. Its so awesome to see : ) Part of me doesn't feel old, but then sometimes I look at them and think "Thats my sister's baby and the other one is my baby" and I know that we're getting up there!

One last thing about Asher, we are truly excited about this one! Neocate (the makers of his formula) has put their medical food paste back on the market! When I got this update from Neocate, I literally had myself a good cry.

I didn't post at the time, because it was so depressing, but Asher failed both of his food trials.....and he is always hungry now! Its draining feeding him every two hours and waking up every two hours at night! I'm hoping that we can get a prescription for the food paste and try it out next week. We are hoping it will keep him filled up longer and maybe we'll all be a little happier and more rested! Heres to hoping!

On other fronts. It was brought to my attention recently, that I never followed up on my liver issues. I can't believe I didn't do that, especially since I got very good news. My tumors are harmless tumors that are called FNH....they don't turn into cancer and very rarely do they get biggger. I will have an MRI in six months just to make sure....but many people live with these tumors to a very old age! It was such a relief to get that kind of news. As far as stress goes, Asher's medical problems are enough for me!

Anyway, Yesterday I got together with a bunch of other moms that I have been talking to since I got pregnant! It was very cool to meet these girls and attach faces to the women who have given me so much support and great advice throughout pregnancy and my troubles after Asher came! We plan on doing another get together in the warm weather when all the kids are mobile!

The basement project is still in full swing. We have an electrican coming and the contractor next weekend to finish up the big work downstairs....and then we just have tp pick out paint and set up shop downstairs. Its going to be great to have more space! I'll post pictures once the project is done : )