Echo's and Ultrasounds

Today we had the final (*knocking on wood*) assessment appointments for Zachary. We went down to the hospital at 8am to register. First we had his echo and Zachary did incredibly well and sat calmly on my lap the entire time. The tech was highly impressed. She commented that she did not see anything lift threatening or too abnormal. I am assuming his murmur is still there but will need to call on Monday for the results.

We then did the EKG and again, he sat very still watching the wires hang from him. This tech said nothing but as I've said before I am not too worried about his heart since he has had a few echo's before. If something was wrong, I would be completely surprised.

Then we sat and waited for the ultrasound. This tech didn't impress me too much and grumbled a bit about "how fun this would be". Gee, you think it is fun for any of us? Sure you may run tests on screaming kids but you are not sent him waiting and facing the unknown and possibly some horrible diagnosis. I guess everyone can't be happy but whatever to her. I must admit I was very happy when a radiologist stepped into the room and said he wanted to stay for the ultrasound. He helped me hold Z and entertain him as Jason was trying to entertain Jonathan.

Zachary did pretty well for the most part but towards the end he got a bit restless. I don't blame him 2 hours of being looked at and scanned can wear on you especially when it's nap time! The abdomnal US consists of measuring his spleen, liver, bladder and I believe kidneys. If you recall, last year when Z was extremely ill his spleen and liver were enlarged and this is a part of JMML. In November Dr. Rob felt the swelling was gone but in Jan. the geneticist didn't like his little "poofy" belly.

I heard the radiologist and the tech making comments to each other but couldn't catch the exact words as Jonathan had noisy toys and Z was crying. Obviously, I am a bit concerned about this ultrasound. I can't explain it except to say it is just a gut feeling I have. Hopefully I am wrong.

My plan is to call on Monday or Tuesday to see if they have the results. Then we will go from there.

Time to go, Zachary is done with his lunch.

Appt. 3 and 4

Today we had Zachary's Audiology appt. He has had a cough/cold for about a week. I had caused it on the 2 molars he was getting in. We arrive at the hospital and they do this test on him to see if he has fluid in his ears...DING DING DING! We have fluid in both ears! They continue with the test but warn me if he fails part of it, it could be from the fluid. He does good on the loud noises but is very easily distracted by the nice lady playing with him. Plus he realizes when he hears a sound and looks to the right, Winne the Pooh dances (he is in a box in the corner) so he begins to play peek a boo with Pooh!

They put a headset on him that attaches to the outside his ear where the nerves are. This will bypass the fluid. He has a bit more response doing it this way. The Audiologist suggest we take him to the Pediatrician and get some meds and then come back in a month. Sorry but I quickly think, more money and more time off work! I know that sounds selfish and I would do anything for my sons but when does it stop!

So off to the pediatrician. He hears his cough and immediately checks his lungs...sounds good. Z loves this guy and lets him do all kinds of stuff to him. Such a good boy. Then he looks in the ears and says that there is fluid but they were not truly infected but because of his cough he puts him on some amoxicillian to prevent the fluid from turning into an infection. This made me happy because I really feel like someting is wrong w/Z since he has this cough again so the meds will help ease my mind a bit.

Have to go get him from his nap...he is being rather fussy and I think he wants to cuddle.

Next week we have the echo, ekg and abdominal US. Another day off work, 4 hour doc appt. and I guess a few hundred dollars. This kid better pick a good nursing home for me when I'm old!

Happy Birthday Mom!

Tomorrow is Mom's birthday...the second one without her. I still find myself thinking "Oh wait until I tell Mom" or "I need to call Mom" only to realize she is no longer here...yet again. Yes it has gotten easier but I think part of me will always "forget" she is gone and remember that she is gone will always hurt a little bit.

As I type this I am watching Moms favorite soap opera...The Young and The Restless. She loved that show and I can remember watching it when I was in kindergarten and home with her. I went to catch the bus AFTER Y&R was on. A few of my sisters and I still watch it and talk about it. I think in some strange way it will always connect us to Mom. When a few of us are together and we start talking about it someone, usually one of our husbands or someone who doesn't watch it, reminds us that it is just a tv show. Well yes it is, but it has been a part of our life for a very long time and part of our relationship with our Mother! So in a way, yes it is real.

Tomorrow I think Jonathan and I will make a cake and he asked if we could sing happy birthday to grandma. I told him of course and that she would hear us and smile.

Happy birthday Mom. I miss you like crazy and will love you forever. You will remain in my heart and always be a part of my life.

Appt. 2: Opthamologist

Yesterday we had Zachary's opthamologist appointment. It was one of those LONG appts that I am growing use to. Unfortunately, Jason isn't so use to them! We arrived at 9:10 for our 9:15 appt and didn't leave until 11:15.

Zachary was a good little boy despite missing a morning nap and mommy forgetting his snack! He had his eyes dialated and tolerated the drops very well. This Doctor was wonderful and he was voted one of the "Top Docs" of St. Louis last year. We have been really lucky with the doctors we have been seeing for him.

Anyway, they said there is not sign of a lazy eye and no need for glasses. Everything looks good. He has droopy eye lids that they can fix when he gets older if he feels the need. I have it too so we can be droopy together. He did say his optic nerves appeared "different" than most "normal" people and assumed that had to do with the NS. His geneticist will know more when he sends his report on to her and we will discuss it after all his appointments are done. 3 more to go!

On a lighter note, he is cruising along the furniture and has a bit of hesitation going from one thing to the next. He gets really scared. But I had the coffee table really close to the couch and he walked along the table and hesitated but then went for the couch. He was so proud he began squealing and clapping his hands. We are making progress!!!

We are trying to set up blood test for Jason and I and hope to have that done soon.

Well off to start the day and get ready for my nephew's wedding!

Appointment 1 for March

Yesterday I took Zachary to the big hospital for an ultrasound of his sacral dimple. They were puzzled as to why he was coming back in at 15 months when they did 2 of these xrays when he was sick.

I explained to them that it felt as if his tail bone was pretty low and you could feel it when you wiped him and sometimes there was a spot that would bleed from like cracked skin. Dr. Kate wasn't overly concerned but felt it was worth checking out.

The tech called in the radiologist and they confirmed no cysts or anything and it seemed normal. His dimple has extra folds of skin but his sacrum (did you know that is what they call the end of your tail bone?) is a bit lower than most folks so it is a bit more noticeable. As for the sore spot, keep using desitin and neosporin and hopefully it will clear up. It doesn't seem to bother him so I guess that is good!

One good thing was when the radiologist walked in and I read his name tag I was thinking to myself, "OH you are the man we got countless bills from last year and I had never met you!". Nice to put a face with the man whose salary you are paying huh? LOL

Today we meet the opthamologist. Stay tuned for a very exciting update later this evening!

Random Act of Kindness

Tomorrow, March 9th, is a very special day. It is the birthday of my friends' dear son Thomas. Thomas would have been 4 years old. K and I met on a trying to conceive board about 5 years ago. We supported each other during the journey of trying to get pregnant, getting pregnant and counting down until our sons were born.

Sweet Thomas came in to the world on March 9, 2005 and touched more lives' than anyone could imagine. He grew his angel wings on March 11, 2005. His Mom is a wonderful person, friend, daughter, mom and wife. I adore her and appreciate that because of Thomas, I met this wonderful woman. I will never forget Thomas for touching my life and sharing his Mom with me.

K and her wonderful husband have asked those that want to honor Thomas to do so with any random act of kindness. It can be small or large but they just want to make the world a better place in memory of Thomas. I love this idea. For 3 years I have donated books to a children's book drive at my work. I let Jonathan pick them out and I write a message in them. He has learned that these books are "for Thomas". He knows that Thomas is in heaven with Grandma and Buster.

Thomas has made the world a better place and I encourage each of you to do some random act of kindess tomorrow. Life is short and so very precious and if we can each make one person smile, let them in line in front of us at the store, open a door for someone then maybe, just maybe, that person will pay it forward and your one kind gesture will be spread on to many others. Think about it.

Minding my own business

Last weekend I noticed that my neighbors newspapers were piling up in his yard, he had about 4 of them. I have lived here 10 years and my neighbor and I have barely exchanged more than 40 words. He is a loner, single and in his late 40s. My roommate, back in the day, nicknamed him Light bright because he left every light on in his house and never closed his curtains! We could see right in his house if we opened the curtains in our room or the boys room. We often saw him eating dinner and watching tv.

Truly he was a good neighbor, never complained and was friendly to the kids at Halloween. I would see him at the grocery store but we never talked. He quit smoking after he got sick a few years ago. His uncle came to stay with him and we talked more to his uncle than we did him! He had few visitors. He mowed his lawn 3 times a week and began taking walks. He left for work when I did and was home around the same time. He did his laundry at the laundry mat on Tuesdays...I would see him leave w/his baskets and then see him at the laundry mat if I drove by. No, I didn't know him but after 10 years I knew his routine. It amazed me how much I did know about him.

This week I have been struggling with the fact that his papers and mail are not being picked up. His car is in his garage, yes we looked in the window of the garage. I saw his cat on Wed. so maybe he was just on vacation? I made my sister come over and look in his front window with me. TV was off and we didn't see anything.

I had my brother in law call his dad who is a police officer in my town. Shortly after, 3 police cars appear. The PO came over to interview me after looking in the windows. I told him "I really hope he is on vacation!". PO said, "No ma'am he is on the couch.". What? I couldn't concentrate on his questions and felt like I was in an episode of Law and Order. I don't know when I saw him last, at least 2 weeks. He was neat. I told this poor PO everything I knew and I asked why no one would look for him! This poor man sat in his house alone and dead for over 2 weeks? They had to break in the back door and had to let the house air out a bit. God that poor man!

Why didn't his boss call about him? Was he laid off? I know if I had called sooner the outcome would have been the same but still, I wish I had called sooner. I had to rack my brain for his name b/c we use to get his mail once in a while. I am still in shock. I am glad that Jason and Jonathan were in the country. I am glad that when my sister and I looked in, God spare us from finding him.

I just pray that they find his family, that he has family and that he can get a proper funeral. My heart breaks for him.

I hope that if I don't show up for work for two weeks that someone will call someone about me. I just don't get why no one did anything? I mean I was afraid I was being to nosey so I minded my own business but at what point does this become our business? It has to be someone's business, right? I guess we all get wrapped up in our own lives that we forget to take notice of the small things. I think I will become a little bit more nosey now!

They also couldn't find the cats. So I told animal control I would watch for them and call her. Poor kitties.

RIP S.W. I will miss you even though I didn't really know you.