July Physical Therapy

Today we had Zachary's PT appointment. Kelly arrived and Z was full of energy and anger. As he gets older he is getting more and more frustrated with his lack of ability to communicate. Kelly pointed out a few things that made my mommy antenna stand up full alert.

Let's start with the good stuff, Z is making great progress. He is able to do all the exercises that she assigned us last month. Today we put a step stool in front of the couch and Z used it to help him climb on the couch. He showed Kelly how he can take a few steps from me to the couch, how he can climb up and down the steps, how he can stack some blocks and a few other tricks and words. Our concerns are still his lack of stability in standing and walking. Kelly said she had no concerns with his speech and most of what he was doing is just par for the course and he will get stronger as he takes more steps. In order to help him we are to let him stand in front of the wall or one of us and let him take 3 steps and have him stop...this will help him learn to slow down and eventually help him stand rather than him going until he finds something/someone to grab on to. We will also continue what we have been doing. If he doesn't have any progress in this by his Aug appt. then we will discuss getting him more therapy.

Kelly pointed out that she thinks Z has a high pain tolerance. While she was here Z showed her how he likes to headbutt the floor when he is mad, how he bites himself and smacks himself when he is mad and frustrated. We talked about how he doesn't crawl on all 4s and will belly/army crawl on the concrete and get all scraped up and he never cries. He falls and doesn't cry unless it is a slam to the floor with his head. He takes a lot. I just assumed it was because he dealt with his fair share of needle pokes, surgeries and tests and maybe he was just use to pain. She didn't say what her concern was but I kind of figured where she was going and maybe I'm wrong. I've read that Noonan Syndrome children can be autistic too. I did google high pain tolerance in autistic children and it seems that some children with Autism do have a high pain tolerance. I've watched him for a few months and wondered if he was on the Autism spectrum or if NS and Autism cross in some ways or if he just Zachary being Zachary. In the end it won't matter what label gets stuck on Z because he is Z and we love him for who he is and always will!

We go see Dr. Kate in 2 weeks and I will ask her opinion on all this...more therapy or if we continue to wait and see how he progresses. We will also have her check his liver and spleen as the oncologist wants that done every 3-6 months. Then in Sept we go back to the geneticist for a follow up. We will review all his tests and discuss what the next steps are and what doctors he needs to see.

Jonathan is still adjusting to school. He cries a bit in the morning but then seems to be fine. He tells me he only cries one time a day now and that he tries really hard not to cry but that I am gone too long and he misses me. It's sweet to be loved so much but I told him not to waste his day being sad because Mommy will always come back for him.

Will it be me?

Thursday I went to have my blood drawn to see if I carry the Noonan Syndrome gene. I expected this to be a quick in and out test but my veins had other plans. All my veins decided to hide and it took 4 people, 6 sticks and an hour and 15 min later before the 14 cc's of blood they needed were drawn. I was praised for not crying, screaming, kicking, hitting and biting anyone and was offered a sucker and graham crackers. I will admit, it started to hurt a few times and I wanted to kick but I didn't. They even brought in the vein finder and still my veins were nice and deep. For this, I owe my mother...thank you for my deep thin veins, each time I have blood drawn I think of you! Love you Mom! Now I wait and see if I "gave" NS to my son or if it was a spontaneous mutation. If my test is negative then we go on to test Jason. If he is negative it stops there. If one of us is positive then we test Jonathan and then have our hearts checked. The bruises I have today are so pretty!

Zachary is who he is and I love and adore him for who he is but when I see kids younger than him or his own age doing things that he isn't, my heart breaks a little. I know many people ask what he is doing out of concern and curiousity but some people aren't so kind. They ask to compare children and it hurts. Most people are not trying to hurt me and I know that. I see my Z with babies half his age and I see them doing things he can't and I feel so bad for him. Don't geet me wrong, I love hearing about what other little ones are doing and I am proud of them, I just wish Z was doing them too! I know he doesn't care but I feel like I have let him down somehow. He fought so hard that first year of his life and now he has to struggle to do normal baby things. It isn't fair. He is the sweetest most precious boy and I adore him and love him for who he is and wouldn't change him one bit. I just don't want him to struggle to "fit in" or "keep up" the rest of his life. I am not sure how to get over this and not worry about it all so for now I will just keep doing what we are doing and pray he continues to get stronger everyday.

Z will be 20 months tomorrow and he is cruising along the furniture, climbing up and down steps and might just be the fastest army crawler in St. Louis! He sees steps and will turn around to go down them. He will sit on his step stool (with my help) and stand up and take a step to me. Kelly, the PT, gave us this exercise to do and he is so proud when he does it. So yes he is improving and he will get there in his own time. He is talking more and says "please", "thank you", "I do", "all done", and signs more. He adores his cousin Arianna and is learning so much from her.

Jonathan is struggling w/his new preschool/day care. I know it is normal and I also know it is the nap time (no tv) and the lunch time (he has to eat what they serve) that is stressing him out. I just keep telling him that I will always come back but he said he still misses me. He is a sweet heart when he isn't cranky. He will ask me why God picked me to be his Mommy and I tell him that he picked me. So we now talk about how before he was born he and God looked down and he saw me and his Daddy and he told God he wanted us to be his family so God gave him to us. I love it when he talks about picking us. This kid has a great memory and a wonderful imagination. He is something else.

Well the NS tests can take up to 4 weeks. As I learn more I will share it with you all.

The Sky is a Little Brighter

It's ironic that my last post was about the importance of family and that evening my Aunt passed away. My Aunt was a wonderful woman full of love, spunk and a laugh that would brighten anyone's day. She was kind and very loving. I could look at her and my uncle and see the love they shared and it trickled down to their children and grandchildren. They have a wonderful loving family and I hate that we only see each other once or twice a year. My one cousin pointed out that the last 3 times she saw me was at funerals. Sad but true. I know that Aunt Pat is up there with my mom and telling her all about how we all are doing and they are laughing and having a good time. You will be missed Aunt Pat!

On my dad's side of the family I am the youngest of 54 grandchildren. I am always amazed by the amount of 1st, 2nd and probably 3rd cousins I have and now understand why no one could remember "which one" I was when I was younger. I laugh now because I am usually called Sandy, Tammy, Debbie and then finally Jenny by nearly everyone of them! Dad always did it too so I've gotten use to it. They know I am one of Mel's kids and sadly I am now also known as the mother of the little one that was so sick. It's okay because it IS who I am and I am proud of who I am. It's become a game now when the family gets together...who is that? Which one are you? I think at the next family reunion we should wear name tags!

So tonight the sky is a little brighter as it has another star and another family is a little sadder. Kiss your loved ones and always say I love you.

Family...that's what it's all about!

We just returned from a wedding in Iowa. Jason's cousin got married and it was a very sweet and beautiful ceremony. I always get teary-eyed at weddings and this one really got me going. I love seeing everyone all dressed up and so happy and so full of hope and love. Congrats to Stephanie and Charlie...we wish you much happiness in the future!

Seeing family always gets me emotional and watching my kids interact with family gets me even more emotional. I know some of you who know me are saying, "Really can you get any more emotional?" and the answer is yes, I can! I loved watching the kids dance and play with cousins that they only see 2 or 3 times a year. I love watching them reach out to people and warm up to them. I love seeing them light up when they see their great grandma and grandpa or hear Jonathan talking about the times we visited them and the things we did with them. I am so glad my kids will have all these memories with family.

Zachary warmed up to Jason's cousin Allison last year at his Aunt Nancy's funeral. I swear he remembered her because he spent a good hour "dancing" with her and playing with her last night. I wish I had taken pictures but I got caught up watching him dance and he danced until we left at 10:30! He was so tired but he was only happy if he was standing with someone on the dance floor and doing is head bopping, toe tapping dance. Our little rock star put on quite a show.

It's funny because I see so much of Jason in both the boys and in Zachary I see Jason's dad and his uncles yet I also see my dad and his brother in him. Maybe the Fosters and Keevens are related? ha ha ha!

Family is just the best, even when we don't tend to think they are, deep down they are what matters.

Now on to the less sappy stuff...Jonathan starts his new preschool/day care tomorrow. I am so nervous for him. Silly I know. Jason and I will take him and drop him off for his first day.

Zachary has PT this week and I'm eager to see if she thinks he has made any improvements and where we go from here. I also have on my To Do list to call the geneticist to find out if the insurance company approved testing for NS for Jason and I. I keep forgetting about that.

Anyway, I best go, Jonathan wants to bowl on the Wii before bed!

Happy 4th of July!

I sit here listening to the rain (and Dora) and watch my boys sit on the couch eating pretzels (sharing!) and watching Dora. It is a nice quiet, peaceful moment that is ready to pass and I'm sure it will before I finish typing. Either way this is what life is...finding the small peaceful moments in the midst of the everyday craziness! Just 2 minutes like this can help me recharge and reconnect and gives me hope for days to come.

Jonathan just returned from Alabama where he stayed with his grandparents for a week. I think he came home with an extra suitcase full of new stuff from Grandma and Grandpa. I was happy to hear he was a very good little boy b/c once he got home, all his manners and good behavior were lost. Darn it. I was glad he had this opportunity to stay with them. I remember staying with my grandma in the summer and it was a lot of fun.

Both boys are doing well. Zachary is walking between two people and will actually steady himself and take a few steps. He gets so excited and is so proud. We are working on the exercises Kelly gave us and he is getting stronger and building confidence. He had 3 shots this week and I think is now only 6 months behind on his shots.

I hope everyone has a great day today and enjoys time with family and friends and of course watches some fireworks!

Happy 4th of July!!!