A Good Appointment

I am really beginning to like these good appointments. My goal is that one day I stop waiting for the other shoe to drop but I am just not quite prepared to do that just yet. One day.

We met with the geneticist yesterday. I really like her. She is down to Earth and very personable. It seems that most of Z's doctors have been this way and either it is how most pediatric medical professionals are, or we just got way super lucky! Z weighed in at 24lbs and is 32.5 inches tall. For a "normal" child he is I think in the 10th and 25th percentiles but for an NS child he is around the 50th percent mark and we both feel this is great. However, she is referring us to an Pediatric Endocrinologist to discuss growth hormone therapy. He may not need GHT now but could very well need it in the future. When I called to make his appointment, it was comforting to hear the receptionist say, "Noonan Syndrome, okay." and I even told her, "this is the first office I called and they knew right away what NS was." and she laughed.

I told the geneticist that I had concerns about his soft spot still being open. She felt it and said she saw no reason for concern but if Dr. Kate felt concerned then we could follow through with another scan. However, she pointed out that earlier this year he had a brain scan (Really?) and it was normal. Maybe that was the $550 test he had done? I really do not recall this being done! My bad! So for now, that is off our list of worries.

We went ahead and got Jason tested for NS and should have the results in 4 weeks. If he is negative, then there is no need to worry about JD. If he is positive, we have to get JD tested and his heart checked. She explained to us that she feels the low muscle tone is Z's only "effect" from the NS. He has the facial features and such but none (thank God) of the major disorders and she does not see them just appearing later in life. She pointed out that the gene that causes his NS can cause JMML. Does this mean he can get JMML (the real JMML) later in life? Yes. Her (and Dr. Rob) told me that the chances of a NS child, w/the mutation that Z has, developing JMML is very low but it can "come back" and usually does by the age of 5. As my friend Melissa told me, "He's almost 2!" so yes, we are closer to 5 YO! :-)

His orthotics will be ready in about 3 weeks and I think (knock on wood) the state is paying for them. I took the advice of my friend Gina and added some advertisements to my blog. If you click on them, little Z earns money. It isn't much but every little bit helps! There are so many people worse off than us and I am grateful for all that we have but somedays I forget what all I have because I get consumed by what I have to pay. I am really trying not to be negative and I appreciate everyones hugs, wonderful advice and support. It helps keep things in perspective for me.

We did put in a request to have Z evaluated by a developmental therapist. By the age of 2 they should be saying 50 words. I am not worried about Z as I know when he gets stronger in his walking the words will come but I feel like he understands so much and just can't get the words out. So I want to see if there is more I can be doing for him. If it is normal for him then I am fine with that but if we can help him then I am all for that!

September Therapy and Stuff

Not sure where to start because I meant to write a few blog posts but ran out of time. Last Friday Z had the Orthotist. We had a bit of a mix up w/the RX for the Sure Steps and I'm still not 100% sure if I got it right. Then we get there and this kid LOVED the waiting room. He was so at home he decided to poop. And guess what? I left his diapers and wipes in the car! Anyway, they first did a mold of his foot after watching him walk a bit. Then as we were leaving she came back and said we have to do a cast because they want it above his ankle. This is why I think I messed up the RX because you see I think the SureSteps do not go above the ankle. Guess I'll find out! So we did a cast of each foot and the whole time Z sat there crying and saying "Ow, ow oooowwww!"...so dramatic. He did pick out the material for his SureStep (think I answered my own question and maybe I did not mess up the RX) and it was a baby sports theme or as Z put it "bayball".

Monday was the 2 year anniversary of my Mom's death. It was a very rough and emotional day. Much harder than I expected it to be. But after dinner I asked Jonathan to go to the cemetery with me. Mom is buried at a National Cemetery here and it is so amazing. We got there around 6:30 and were amazed with the deer that were out. I was glad we had the truck so J could roll down the window because a few of them came right up to the truck and if he had longer arms, I bet he could have touched them. I took a few pics and this one I liked the most. I have been struggling with a lot of financial worries and have been praying on what to do. I sat down and asked mom to give me a sign and tell me what to do. When I posted this picture on my facebook page my niece pointed out that it was the daughter deer with her mom watching over her in the background. It hit me then that this was my answer from Mom. It was so powerful to be there and to share that moment with Jonathan. He remembers her. As we sat on a bench talking he said he was sorry my mom died and that I missed her. He told me not to cry because I would see her again in heaven. Such wise words from such a young mind. We hugged and on the way home stopped for $1 sundae and McD's. He earned it. As much as that boy can wear me down, he knows when I need him and shows me so much love. I love him so much.

Today we had a physical therapy appointment. It went well. Z is making progress and that is for sure. He is talking more. At 2 they want them to say 50 words, Z is not there yet but she told me not to worry yet. We are to work with trying to get him to stand up without holding on to anything, practice more body parts and naming things. He is very much entering the terrible twos...not terrific twos! He is snotty and demanding and refuses to try to stand up by himself. He will knee walk to the table and pull himself up. This child is determined to do things his way! He does talk more and loves to have his toes tickled. He has a few songs he tries to sing, ABC's and some Laurie Berkner songs...he loves her! My favorite thing that he just started doing is with me and my dad. When I hold him and we hug/kiss my dad goodbye he puts one arm around my neck and one around my dad and hugs us at the same time. Then he flashes his million dollar smile. It is the sweetest thing. He is so very loving when he isn't whining...ha!

Two Years

Tomorrow, September 14, is the second anniversary of my Mom's death. Some days it feels like she just died yesterday and other days it seems like it was so long ago. No matter how it feels, the pain is still there...still fressh and the sadness still sneaks up on me when I least expect it. Yes it is a bit easier but still a lot harder than I imagined it would be.

I catch myself or my sisters using "mom-isms" or doing things that Mom did and it makes me smile. She will always be here with us and she will always be in my heart. I know that she has helped me cope with everything that has come my way in the past 21 months. And I know that as we move forward in life, she will be there. I talk to her and pray to her and ask for guidance. She had so much knowledge and experience and I just wish I could have one more conversation with her. One more time to tell her goodbye and that I love her. I did tell her all those things earlier that year when we thought we were going to lose her but I would give anything for just one more conversation with her. One last hug. One last smile.

The last time I saw her was a week before her death. We were out to dinner. She was not feeling well and seemed a bit off. So when I got the call that following weekend, that she was being taken to the hospital and she had stopped breating, in my heart, I knew this was it. I did not want to believe it and I just kept hugging my pregnant belly and praying that she would be okay or that we would all be strong enough to make it through whatever happened. I think being pregnant and having the comfort of Zachary in my belly helped me cope with her death. And we are okay. We are making it. It's hard, it's sad and it sucks but Mom left us with so much. She was amazing and I am going to make sure my boys know it. We will probably go visit her grave today or tomorrow, look at the photo album I made for her and light a candle or release a balloon. Jonathan likes to release the balloons so that our friends and family up in heaven can catch them and enjoy them. I love the thought of that too.

Mom, I love you, I miss you but I am okay. Thank you for being my Mom. And I'm trying to take care of myself like you use to always tell us to do! :-) You will never be forgotten and will live on forever in my heart. Rest in Peace Mom!

Little Man Needs a Job

I met today with our First Steps coordinator and the PT. It was to re-evaluate Zachary IFSP or plan of action. Our coordinator was amazed with what all Z has started doing since she first met him. And our PT was impressed when I said Z was walking about the house. I thought maybe, just maybe she would say "oh lets wait on the orthotics and see how he does.". Nah, she said he absolutely still needed them so we pressed on. The PT had written on a piece of paper the codes and costs of the orthotics and I peeked at it...$1,600! Seriously, I nearly puked right there. I had to calm myself and tell myself that this was before any coverage that we might be eligible for. Hopefully, MO First Steps will cover a large majority of it, if not all of it. We go Friday for measurements.

After we determine our costs, I am going to see if there is any way I can submit it to my insurance. I have not gotten a real clear answer on that yet so I'm hoping that whatever the state doesn't cover, the insurance will. If they could at least meet us halfway and let us make payments I'd feel much better. Cross your fingers that we can get some help with this. I am eager to see our little man get the help he needs and just take off. Otherwise, my cute little man needs to get out there and get a job. He is great at sweeping floors with his tummy. :-) Give us a call if you need your floors done. Ha!