Catching up

Sorry it has been so long without an update. Perhaps you have enjoyed the break from my ramblings. Here is the latest news. The Devin Nichole House is going to make an exception and allow all of us to stay for our trip to Boston in June. This is perfect! Not only is it paid for, but it will also allow Libby to get the true experience, squeezed in one room, tripping over each other, walking down the hall to the bathroom etc. That way she won't have this misconception of us having a grand time in some luxurious hotel when we go without her. I am both anxious and excited about this trip. It will be the first time we hear about some of the results of the original baseline testing. I am anxious to hear about the MRI, what the enlarged adenoids means for the boys, the circulatory tests explained and more.

Bennett has a nasty cough. I took him to the doctor on Monday and Dr. L as sweet as can be let me know I was being paranoid. "So he's had a cough for three days, no fever, he's happy and his sister had the same cough for a week right?" Uhh yep! Oh well, better safe than sorry. In the back of my mind I recall that one of the seven individuals with this disorder died at the age of two as a result of respiratory distress. When I told the doctor that, he totally understood and thought I did the right thing. Unfortunately I don't even ask anymore when I call the triage nurses. I just tell them I would like to bring Bennett, Nathan or even Libby in to see a doctor. They are always very obliging. While we were there, I noticed a red mark on the side of Bennett's head. It looks like a flat birthmark. I started freaking a little and asked the nurse. She looked a little nervous when she looked at it so then I was freaking out more until Dr. L came in to see us. Then of course Nathan had to go the bathroom and when we got back to the office Dr. L was gone and didn't return for what seemed like an eternity. I think it was only 10 minutes. He eventually took a look at it and ruled out any kind of rash. He said it might be that he bumped it (totally possible but it didn't look like an injury) or a birthmark that we are just noticing due to Bennett's hair loss. We are just supposed to watch it and see if it changes! What a relief! I thought for sure he was going to ship us off to dermatology or something! These kids are going to give me a heart attack!!! No one prepared me for this part of parenting!!

Lets see, I have done nothing to start a non-profit, get a tax id number or establish a local chapter of PRF. Meanwhile my sister Donna has been super busy!! She makes beautiful decorated cookies and decided that for Easter she would try selling some at her church. She was given permission and sold all 200 of her cookies yesterday!!! Plus she was able to tell people about our family and more people are praying for Nathan and Bennett! I am so excited!! She also has orders for more than 250 cookies for Friday and Saturday. She has three kids herself so she is not sure how she is going to get all these done. Unfortunately she lives 5 hours away. I am just so amazed that she took that step, something that I haven't been able to do for myself and did this for us. It makes me so happy to know that more people are praying for the boys. Here is a picture of her cookies!






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In the works.

There is not too many exciting things happening right now. B still has no teeth, is not pulling up and is not doing much of anything else new and exciting. He is eating like a champ though! He loves big people food if it is soft and cut up really tiny. He has also been slurping down bottles too. He still refuses to hold the bottle and cannot quite get the hang of the sippy cup.

Nathan is Nathan. He is goofy and funny and delightful!

In the works: My sister Donna is designing refrigerator magnets to distribute to family and friends with the kids picture and a brief description of our "situation." I just thought it would be a nice reminder for people to keep the boys in their prayers and spread the word about them. I hesitated because it seems so egocentric and self-promoting but I'm ready to self-promote! I am also need to figure out how to either get a tax free id number in PA and/or start a non-profit or open a chapter of Progeria Research Foundation in our area. We have also begun scheduling our June Boston trip. It is the week after Libby gets out of school and we would really like to take her. The problem is that if we don't take her, everything is paid. If we do take her we have to pay for accomodations and transportation. It may seem like a no-brainer financially but we think it is really important to include her. I know she feels left out alot being the only girl, the only non-biological child and the only one not on all kinds of medicines. (I recently overheard her telling Nathan that he needs to be extra nice to her because she is the only one who was not in Mommy's belly). So anyway, lots to do and it's already Wednesday!!

the hair

The hair situation is kicking my butt. Now I look at Bennett and see that his hair is thinning on the sides too. It hurts so badly to watch it happen to him too. Especially since his hair is so pretty and curly. Yes I said pretty! Mark needs to have a rebuttal blog because of course he disagrees and feels like both the boys hair is maintaining. I'll be anxious and nervous to return to Boston this summer to learn if there have been any improvements in any of their systems, hair, skin, muscle tone, weight etc. I feel very down right now but it is a different down. I no longer feel the unfairness type of anger, just sadness. I will take a picture of Bennett from the side and post later. I think back to that collage of Nathan that I posted here, birth to 3.5 years. I hope that we can slow down that progression for Bennett if not halt it all together. I am still praying for a miracle and still struggling through every day. Yesterday I was feeling the pain and realized there is no amount or type of anti-depressant that can take away the pain of having a child with a progressive disorder. I know what my Father would say, 'God can.' So I will keep praying that the pain will subside either through a miracle in our boys or in a change in me.

Parent workshop

I drug (dragged ???) Mark to a workshop last night at Theraplay in Horsham. It was a free workshop for parents of special needs children and it focused on handling stress in the family. It was pretty good and there were some little tidbits we picked up, mostly about Libby and her behavior. I always get very defensive at the suggestion that her behavior could be related to the boys. I guess I feel like admitting that our situation contributes to her behavior means that we have failed in our attempts to keep things normal for her and protect her. Although we are not at the hospital every week like some families or have multiple therapies in the home, things still are often about the boys medical conditions. After all we spent that whole week in Boston for the boys, went to Texas for the boys, have tons of medicine for the boys and panic when one of them falls or gets sick. It does not necessarily mean we have done a poor job if she is having a reaction to all that is going on in our family.

Many of the parents in attendence at the workshop were parents of children with autism. Although we are dealing with completely different challenges, there are some commonalities in having a child who is not typical. I guess the one difference that stands out in my head is that my kids will not steadily get better. Do not get me wrong, given the choice I would prefer to have children who are medically fragile but can have a relationship with us. Although I'm sure we would deal with whatever came our way, I think autism would present a much larger stress on the family and marriage than our issues. But when I am feeling positive, in the back of my mind that doubt creeps in about the boys and the aging process that is happening in their bodies. Although we don't know the rate at which it is occuring, my sense is that yes, we are moving forward but at the same time we are moving backwards. Part of the reminder has been that I think Nathan is losing more of his hair on the sides of his head. Mark does not think so and I hope he is right. I just have so much hope in this medicine working and then think....what if it doesn't? What do I do then? How do I go on?

Here is a picture of Nathan's hair (or lack of) on the side of his head. I always try to post pictures of my kids looking their cutest but maybe it's time to post the other pictures too. I'm hoping that a haircut will help it not look so bad. As you can tell, I am hurting pretty badly today. I guess if I had to choose typical behavior or typical appearance, i would choose typical behavior, but it doesn't make it any easier to accept. Especially when you are dealing with it times two.

Bennett's new duck

I have seen several blogs which do Wordless Wednesday and simply post a picture. Since I am rarely wordless, I am posting twice this Wednesday!! Mr. B (as his PT calls him which I think is kind of cute) anyway, Mr. B hates the bath. He screams! So at a mom to mom sale with my bff Kate, I saw this duck! I bought it thinking he might feel more safe in there and be fascinated with it's yellow duckness! Even the beak quacks when squeezed! Not so much......any other ideas?

Here he is crying his tearless cry!

Happy Birthday!!

Happy Birthday to Libby! I cannot believe she is seven years old!! She is growing up so quickly! I often feel sad when I look at pictures of her during her baby, toddler and preschool years. I never know how much of that nostalgia is due to missing that typical preschool experience with the boys and how much is just the nostalgia of watching the oldest grow. She will always be my baby but she is such a big girl. Our plans for the day include me taking a snack to school and friends over after school for pizza and dessert. She is very excited to get her birthday present and has been begging to receive it early! On her birthday list was....an outdoor four person trampoline, a real dog, a Wii Fit, a real video camera and a tv for the car. There was not much to choose from on that list! We got her a under-$50 video camera. I think she will be really excited.

Ebay

I know that it is very small, but I revised all of my Ebay store listings to donate 25% of my proceeds to the Progeria Research Foundation. I am the first seller to donate to this non-profit through Ebay's Giving Works program. If you sell on Ebay, you can choose to donate a portion of your proceeds or you can give the option at checkout for buyers to donate a $1 to the charity of your choice. I'm not sure how successful one method is over the other but it is something!! For me it is a baby steo tajeb ub embracing our situation, taking it on as our cause. If anyone sells on Ebay, I would love to have you join me in the Ebay Giving Works program.

Libby's birthday

(I actually wrote this on Sunday, March 14th)

Here is a picture of Bennett. He began projectile vomiting on Saturday night and I gave him a bath. He looked so cute wrapped up in his towel!

Libby's birthday is on Wednesday and her birthday party was this Saturday. I think she had a good time. She gets a little overwhelmed with all the noise and being the center of attention. Perhaps eleven girls is too many for her. At one point they were all singing Taylor Swift (very cute) and Libby held her ears closed! I'm not sure how to help her with those issues. Thank you to Kate and Mark for doing so much for the party!!

In other Libby news, we had her conference on Friday and she seems to be doing better in first grade! She is still getting alot of one on one support; however, she has come a long way. There was a resounding "no" from the team when I asked if they were considering holding her back in first grade. Math continues to be her most challenging area.

There is not too much new with Nathan and Bennett. Bennett pulled up a few times on Friday night! It's pretty exciting regardless of what age they are when they achieve these milestones. I have to look back and see when Nathan first pulled up in order to compare. I keep thinking that because he is on the medication, Bennett might reach some of those milestones earlier than Nathan but it does not seem to be the case. He still does not have any teeth which Nathan had by this age. Nathan has been wearing his new orthotics. He was so excited to wear them because he thinks he can walk faster in them!! Sorry this is such a boring post, not much else going on here at the Falcone household!!

One of my virtual friends designed my new blog!! I love it!! Thank you Heather! She too has found herself in Holland, the mother of a little boy who happens to have special needs. You can check out Carter at http://www.teamcarterjay.blogspot.com/

Embrace

I am starting to embrace and accept who we are as a family. We are a family with a cause. Secretly I have always been a little jealous of people with a cause. At least they had direction and passion about something. Well now I am ready and willing to accept ours. I am so thankful that even though our boys do not have classic progeria, we can in many ways be a part of the Progeria Research Foundation. I know I am a little slow. I have been paralyzed for a long time, too long. I am starting to see myself doing some fundraising. I am ready to step up and turn this into a positive. I am ready for ideas and actions from family and friends as well as support when I start to think I do not belong in the fundraising field. As a social worker, my least favorite part of working in non-profit was always the fundraising, asking people to buy raffle tickets, sponsor a walk or donate something was a dreaded and uncomfortable task. Yet here I am having to step out of my comfort zone and do this for my family and myself. I do not know where to begin but I am ready.

Dr. Gordon, the medical director of PRF, will not give up on the families of children with progeria. I am 100% confident that she will never throw up her hands and say, "that's it, I tried my best and it can't be done." Please do not take that to mean that I worship her or consider her savior. I know she is human; however, I also know that someone who has come so far in ten years, from discovering the gene to drug trials, will not quit. She is on a mission and I cannot sit back and benefit from that without trying to help.

It feels good to not fight it anymore. It feels good to not try to pass ourselves off as normal. We are not normal. We are the family with three wonderful kids, two of whom have a rare and devastating disorder. But please do not feel sorry for us. Pray for us, support us and love us but do not feel sorry for us. We are a family with an identity and a mission!

disclaimer: All positive statements in this manifesto are subject to change and become negative, hopeless and angry without prior notice from the author.