Tuesday, March 27, 2012

Clueless in Feasterville

When we began the process of learning about Wolf-Hirschhorn Syndrome, I found a lot of blogs of families that had children with WHS. One of the things that helped me was seeing that these families were in a lot of ways just like us. They didn't have horns in their heads, bodies covered in tattoos, or have 3 heads. They were normal families like ours who were dealing with a very complex genetic syndrome and doing the best they could to help their children reach their full potential. There are a few of these blogs that I still follow because I find them an encouragement and a source of information.

One of these families is going through a rough time, the mom stopped her job teaching in January to stay home and care for their son, who is about the same age as Leo and has WHS, and their twin 3 year olds. She is having difficulty transitioning into the role of stay at home mom realizing just how hard it is on a daily basis. They are also missing her income. Yesterday, she posted about some of this- I could relate, I understood- I am a stay at home mom and we have been living on one income for 13 years now. It is hard, I could relate to her cry for help and I was able to offer some encouragement.

But then she posted today about ordering more kenesio tape. Kenesio tape what is that?- never heard of it. Would duct tape work because we have lots of that! Does Leo need it? She listed a bunch of therapies- Speech, OT, DT, and Vision – Ok- I know what most them are except DT. Does Leo need a DT therapist? If only I knew what it was! Her son is in a stander. Ok- she had posted about that before and I already consulted our PT and found out that Leo would probably not benefit from a stander at this point- so we are good there.

As I read some of these blogs I realize just how clueless we are! Yes, we took infant CPR and first aid, we read books about being adopted, but none of that has prepared us to be parents of a child with severe special needs. I wrote about that here.

So, to get to the point of this post. Kristen, I may know how to save money and how to survive on one income, but you are an expert on WHS and an incredible advocate for obtaining what your son needs. We are all different and have different strengths. Kristen, you will learn how to survive on one income and with more blog reading and internet surfing I may just discover that Kenesio tape and duct tape are not interchangeable.

Wednesday, March 21, 2012

Getting Closer

Tonight we signed the petition to adopt paperwork. Once our lawyer gets these papers back, he can file them with the court and then we should get a court date. We are officially one step closer to Leo becoming Leo Moses Shafer!

Today we spent the day at CHOP. First off we saw the general surgeon. All went well. The nutritionist upped Leo's calorie intake so that he could begin gaining weight. Next off we went to visit the plastic surgeon as a follow up to the cleft palate surgery. That was quick and easy also. Leo was referred to the cleft palate team. We will meet with the team in about 6 months and I hear it is an all day affair meeting with speech, dental, plastics, genetics and the list goes one.

Life is full, but God is good!

Monday, March 19, 2012

The question I have been waiting for...

I knew someday Jonathan would ask this question

"Mom, am I the only one in the world with just one leg?"

Last week we were at Shriner's. They x-rayed his good leg and saw it looked great, after the x-ray he got to pick a toy. He picked the largest truck they had in the wagon. We then met with the team of doctors who of course asked him about wearing his prosthetic. He told them that he liked his leg a lot. I refrained from yelling- "Liar, Liar, pants on fire!" He did admit that his leg makes him slow. The upside- since we came home last Monday, he has been wearing his leg. He even figured out how to ride his scooter with his leg! In May, Jonathan will be going to a 1 day event down at University of Penn. The goal of the day to teach him how to run with his leg. The physical therapist at Shriner's told me that the guy in charge of the clinic who will be working with the kids is the best in the field. She is even going to the event b/c she said she learns something every time she works with him.

At this point, even if he doesn't learn how to run, for that one day he will learn that no, he is not the only one in the world with just one leg.

Saturday, March 3, 2012

Duct Tape

Yesterday while we were at Chocolate World the handle to Jonathan's crutch came off- "Oops!" was Jonathan's response. Jeremy and Jonathan went and found a kind employee who located some duct tape. A temporary repair was made, with cool yellow duct tape. I will now be calling medical supply stores to find one that has kid crutches in stock. Praying the one we used about a year ago when he melted his one crutch will be able to help us again this year. I guess one pair a year isn't so bad for how rough and tough he is on them.

Friday, March 2, 2012

Family Field Trip

Today we went on a fun family field trip to Hershey Chocolate World and the Army Heritage Center! Here is our day in pictures.