Is it really free?

Well it's official, as long as Aetna approves my insulin pump then I should have it next week. The pump that would normally cost me $4,800 will be mine for a mere $24.95. Thank you little Zachary. :-) I am a bit nervous about this but since I have to be on insulin and I find myself forgetting an occassional shot, why not get a pump. I even requested a purple one.

It's sad that the year my company switches to a high deductible plan, my newborn son gets sick. I remember saying, "Oh we are all fairly healthy so it won't be so bad". Did I jinx myself? Either way, now that that $7k is out of the way and everything is free, I'm going for it. I stub my toe, I am going to the doctor! Ok really it won't be that bad.

I am getting Z into see a urologist and possible an occupational therapist if he is not accepted in the Missouri First Steps program. His parents as teacher lady is coming out on Monday to evaluate him. The little booger can't sit up but he sure figured out how to jump out of his bumbo seat!

75 Reasons

Shortly after Tim Russet died one of the local radio stations replayed an old interview with him and he discussed his books. One was about his relationship with his Father and he discussed how he had 8 siblings and for his Dad's 75th birthday each of the kids wrote 75 reasons why they loved their Father. It was memories, things he did for them, with them or things they learned from him. How incredible is that?

I sat thinking of the reasons I loved my parents. Some days I miss my Mother so much that I want to run away and get a new life. It is then that I know I need time with my family. Even if it is a short visit or phone call. Mom knew I loved her. I made sure I told her a few things when she was in the hospital last April. She told me she wasn't going anywhere but I had to tell her how great she was before I allowed myself to step foot on that plane to come home and I am glad I did.

I know Dad knows I love him and I know he loves me. But you know what, I am going to give him 75 reasons why I love him. I want him to know and I don't want to wait. So either grab a snack because this could get long, or feel free to stop here. I'll never know.

75 Reasons Why I Love You Dad

1. I love your smile...it makes me smile too!
2. I love your laugh.
3. I love how you drink that dry red wine and enjoy it!
4. I love the wine mustache you get!
5. I love the way that you love each of your children.
6. I love the way you love your grandchildren.
7. I love the way you love your great-grandchildren.
8. I love the way confuse all our names.
9. I love the way you loved Mom.
10. I love the way you cared for Mom and did whatever you had to for her.
11. I love that Mom told someone, a stranger, that she had a very good nurse (you) and that you took really good care of her.
12. I love that when Zachary got sick you were ready to cancel your flight to FL, all I had to do was ask.
13. I love that you pray for Zachary every night.
14. I love that you told me all along that he was going to be okay and you just knew it.
15. I love that when I was little and I'd get scared during a bad storm you would come to my side and tell me, "Don't be scared. God protected me my whole life and he will protect you." and you would give me a magazine to look at.
16. I love that when I was little you would camp with us in the front yard. No tent just sleeping bags and a few stray dogs!
17. I love that when I hit your new tractor with your truck, you said "Shit happens" and yelled at the worker who left the tractor out!
18. I love that all the years that Mom watched the Young and the Restless, you pretended to not be interested but you paid attention!
19. I love that you knew that you could tease Mom about Victor Newman (from the Young and the Restless) and it would get her all worked up.
20. I love that you are a hard worker and showed me how to be a hard worker.
21. I love that you quit smoking after 30 something years.
22. I love that you told me I make you cry with gifts and cards. Sorry but now you made it a challenge for me.
23. I love that you are lefthanded and now Jonathan is too!
24. I remember when I was about 4 years old and I had a Woody Wood Pecker sticker from a 7-11 slurpee and you let me put it on your big blue dump truck. You were holding me and we were looking at it out the window and the darn window broke! I love how you calmed me down.
25. I love how you would put peroxide on my scraped knees and tell me to watch the bubbles.
26. I love how anytime we had a cut you poured Mecuricome on it and we then had an orange hand with a small cut on it.
27. I love that when the road at the end of street flooded, you took us down there to look at it and well, maybe drive thru it.
28. I love how when you sneezed, it came out "AAAHHH SHIT!".
29. I remember you always had a hankerchief with you and Mom use to give me one of your hankies for me to take to school with me so I could be like you.
30. I love how when I was little you would pretend to step on my belly but really jump over me...it scared me and made me laugh everytime!
31. I loved wearing your t-shirts to bed when I was little.
32. I remember how I loved rubbing lotion on your feet and tickling your feet.
33. I love how every night after dinner, you would have us kids get you a bowl of ice cream.
34. I loved that when I was little and walked into the living room, from my room, you would carry me back to bed and calm my fears.
35. I love how you use to make root beer when i was little.
36. I love that we also made REAL pork rinds when I was little too.
37. I love that I had a special water cup, the little glass with a cardinal on it and maybe a blue jay.
38. I love that when I wanted water in my cup I had to say, “Daddy may I please have a glass of crystal clear, ice cold water?”.
39. I love that you held me as we filled up my cup with water.
40. I love that you let me go to work with you but I was ready to go home when fresh concrete splashed in my hair and on my donut!
41. I love that I always feel safe with you.
42. I love the hat trick you do and how the grandkids are now doing it.
43. I loved it when you talked like Donald Duck.
44. I love that when I was growing up we went out on the boat all the time.
45. I love that when I took my friends to Florida with me you told us to clap for the Dolphins to come and then laughed at us when you videotaped us all standing there clapping.
46. I remember watching the 1982 World Series with you between St. Louis and Milwaukee.
47. I love how you trained our dog Mandy to do so many neat tricks.
48. I love that you and Mom raised me with Faith and taught me about God.
49. I love that you always had faith in God.
50. I love that no matter where we were you went to church nearly every Sunday.
51. I love that you told me I couldn't cut the grass because I'd cut my feet off with the motor.
52. I love that when I bought my house and the toilet backed up, you came over to help me and then said, "next time it happens call me and I'll give you the number of a plumber!". It was a mess!
53. I love that when I told you I saw a psychic and what she said, you told me I was crazy for believing any of that crap!
54. I remember when I was little I would go down to the pool and you told me to get on the high dive, look up towards the house and wave then jump! You were watching me with the binoculars.
55. I remember swimming with you and not being afraid because I had you near me.
56. I remember thinking it was hillarious when you went under water.
57. I love that growing up you were the strongest and bravest person I ever knew. You still are!
58. I loved looking at the coins from different countries you collected while in the navy.
59. I loved hearing your old Navy stories.
60. I loved it when you told me stories about you growing up. I think in one of the stories your older brothers convinced you that you were Superman and had you jump off the roof.
61. I appreciate that when Jonathan fell in your pond, you filled it in. Thank you!
62. I love that you cried at my wedding.
63. I love that you and mom were married for so long.
64. I love that while you made sure I had everything I needed (and most of what I wanted), you also taught me the value of a dollar.
65. I love that you bought property and allowed me to have so many memories of our trips there.
66. I remember when I bought my first car, you fought hard for me to get a good deal. Thank you!
67. I love that no matter what I do, you will always love me and be there for me.
68. I love you for who you are.
69. I love you for wanting me to be a good person and doing all you could to get me there. I'm not perfect but I'm trying!
70. I love the type of Father and Grandfather that you are.
71. I love the hand game you played with me when I was little and that Jonathan now plays it too.
72. I remember being little and out on the "Slow Boat" and we would swim between the pontoons. It made Mom yell at us every time.
73. I remember watching Westerns with you and liking them.
74. I love you for loving me and helping me be a better person.
75. I love you for all the reason above and so many more.

I don't think Dad reads my blog so I will have to find a clever way to give this to him. One day I will find a way to give this to him and he will cry and laugh and know that I love him so very much and I am so very grateful for him and the life he gave me.

10 months

Today marked 10 months since my Mom passed away. Some days it feels like it was 10 years ago and others it seems like 10 minutes ago. Not a day passes that I don't think of her or the impact she made on my life.

I look into my son's eyes and I wish my mom was here. I sit at a family get together and I wish she was here.

They, whoever they are, say the first year is the hardest. The first year of firsts is hard. But how will the second be easier? I don't see how. I see so much around me that I can't share with my Mom.

Dad is a pillar of strength. He probably doesn't realize how much he has helped me through all this stuff with Zachary. He is a great Father and I know he is hurting too. I often wonder what has gotten him through these past ten months. I know life has to go on and I guess we all just do what needs to be done to make it through the day. Then we get up and do it all again. What else can you do?

Mom I miss you and I love you so very much.

Medical Update

It's been a while since I posted a real medical update on Zachary. We went to see Dr. Rob on Friday and everyone was amazed by his growth and his personality. He was flirting and showing off his baby blues. He was a dream. He did good on the blood draw and only cried because he had 3 women holding him down.

We discussed a few of my concerns and Dr. Rob did not brush any of my concerns off. We will now go to blood draws every 2 months. He can start his vaccines at 12 months if all CBC are normal between now and then. This one was normal. I did not ask for numbers because hearing "everything looks great" is enough for me. His lymphocytes were still high (they were in May when he had his UTI). I may ask the pedi if we can repeat his urine culture just because I want to. He was weighing in at 16 lbs.

His muscle tone looks good and we are just to keep working on sitting up with him. As long as we see improvement, then there are no worries. Dr. Rob said he has "line backer legs". LOL He asked if he was vocal and my reply was, "yes he is!". He even made his little motor boat sound for him. His newest trick he learned.

His soft spot is still a bit big but he said (same as Dr. Kate) as long as he is drooling, then not to worry when it is sunken in. It can be a sign of dehydration but b/c his is larger, it is more noticeable. He loves his solids and will now eat some yogurt, cheese, potatoes and bread. He LOVES food!

My main concern lately has been a few spots I have noticed on him. When I did my research on JMML back in January I learned that JMML kids can have Noonans or NF1 so these symptoms always remained in the back of my mind. NF1 kids have 5 or more spots called café-au-lait. Well a few weeks ago I noticed 2 of them. I also noticed a freckle. Most children do not get freckles until after 1 or maybe 2 years of age. Dr. Rob said he wants to keep an eye on these spots and if I notice more then to call him. I read that they usually appear in the first year of life and after the first summer because that is when the baby is exposed to the sun.

So for now we just watch the spots and pray that they are just spots and not linked to NF1.

I'm going to end with a request to all of you, in January I joined a support group for JMML families. The parents were all so wonderful and supportive. Unfortunately, a young baby (around Z's age) named Bobby passed away on July 10th. He is now with the Angels and free from pain. I am sure his parents would appreciate any extra prayers for them. I can't imagine their pain.

D & S, you are in my prayers and I hope you can find some peace soon.

Green beans and Haircuts

Don't laugh at the title, you'll soon understand!

We got Jonathan to let us give him a haircut. Now for those of you who don't know this...this is huge. He screams and we hold him down and shave his head. Think what you want, but it is not cruel. Taking him somewhere is cruel for all parties invovled! Trust me. This time I bribed him with a trip to Chuck E Cheese...anyone want to take him? He did 90% better. Only screamed for 5 minutes and was quite the brave little man. Here is the new hair do.

Z is doing so well with his foods. Once in a while he will gag himself and puke but otherwise he is doing so good!!! He loves to eat gogurt each morning but today I added in toast and God forbid a crumb (yes a crumb) was on his tongue and he gagged and gagged until he puked. Lovely! So no more toast for him. He is a drooling and biting machine...will we ever see teeth??? Ah the green beans, yes here is a video of him eating the green beans Mama made for him. Um I think from his reaction we will not be making green beans again.

We had a great 4th of July and it was nice not to have to rush home after the display. I think Dad was ready to kick us out but we were cleaning up so I think he put up with us so we could clean up the mess we made!