It's a Twin Thing

I could not have posed them better myself...they fell asleep in the same exact positions from their heads to their toes.

Here is what's happening in Kaitlyn and Ryan's little world~

Katie has 4 teeth! Her teeth are coming thru so fast. She has been a real trooper and no signs of teething. She loves to eat finger food. Over the past few weeks we are giving her more textured foods and have been getting away from the purees. She has tried chicken nuggets, fresh squash, peas, potato and carrots, hamburger, french fries, yogurt puffs, shredded chicken and other meats, cottage cheese (not a big fan!) and pancakes to name a few. She loves american cheese, banana's and yogurt. We pretty much let her try anything we are eating but not before examining it first. She will however let you know when she doesn't like something. She will be starting PT to help with her gross motor skills. She is sitting up on her own but she still is not crawling (or attempting). The skills are emerging but she needs that extra push. Katie is very vocal. She is constantly saying "da-da" and she has an adorable, breathy laugh.

Ryan just got his 2nd tooth. He is a little "leaky faucet" and can be a little crabby. We aren't sure if can attribute that to the teeth or if that's just Ryan. My family tends to call him "Cryin' Ryan" but don't worry Ryan, as soon as you can talk....look out Rubin's! Ryan hit a milestone the past few days. He started to crawl on all four, not army scoot. He can get in and out of a sitting position and has started to pull himself up on everything. He loves to stand.

We have also been giving the go ahead to start trying new foods for him. I get a little upset at times because I want him to have more of a variety of foods and textures. In a world where we are accostomed to eating whatever we want and how much of it we want, it upsets me to think of his road ahead. In the grand scheme of things, it comes down to diet modification and I know "it could be worse" but he is my baby and as a parent I want him to live in that ideal, carefree world. Ryan loves to eat. Unlike his sister who takes little bites, he likes to see how much he can fit in his mouth at once. He loves Gerber puffs, banana's, diced fruit and carrots. He tried lemon pudding this week. At this point it is the only pudding he can eat. It is considered a "free food" for him, free of PHE. Last night I made him fresh squash. He really does not turn anything away! We are going to try some regular pasta this week too. When we receive the results from his next blood work up it will give us an idea if he can have regular pasta or if he will have to eat lo-pro pasta. His levels have been great. Last month his PHE levels were 4.5 and this month a 3.8. By the way, I must add my son is my hero. When he had his blood draw this week he watched the entire time and not even a flinch or a cry came from him (Thanks Eric!). A normal blood phenylalanine level is about 1mg/dl. In classic PKU, levels may range from 6 to 80mg/dl. In Ryan's case, he is a mild PKU (hyperphe) where the levels are between 4 to 10mg/dl. The exact definition of a safe range is still widely debated, but the National Institutes of Health suggest that blood Phe concentrations remain between 2 mg/dL and 6 mg/dL. Our hopes are that Ryan will be allowed a less restricted diet, able to eat regular food with the exception of the chicken, meat, fish etc. There are numerous medical food website we a can order Ryan's food from. They sell lo-pro versions of pretty much anything from cheese, pasta, brownies, breads, bagels, cookies. They even have their own kind of nuggets, corn dogs and meatballs, pizza, and mac-no-cheese. I have heard some of the food is really good and others its about the texture. Check out the great options Ryan is going ot have at http://www.cambrookefoods.com/ .

We hope everyone is doing well. We would like to wish all our family and friends a Happy Passover Holiday.