I was told that they like babies to gain anywhere from .5 oz to 1 oz a day. Well this past week, Zachary gained 10 oz! Can you believe that? He went from 11lbs 3 oz to 11lbs 130z! Yep, that's my boy, my little over achiever!
He is a dream these days. The bond he and Jonathan share is amazing. Just watching them together is so moving. I can tell that in a few years these boys will be giving me a run for my money and probably ganging up on me. I think I'm stressed now, remind me of all this in a few years.
Trace Adkins has a song out called "You're Gonna Miss This" and I try to keep this in mind when I get frazzled. It's funny because tonight JD and I were at Target and he was being so good and so independent. Then he walked down an aisle without meand I got a bit stern with him and told him he was stressing me out to which he replied, "I was just looking at that stuff mom"! Well a man walked by and said, "One day you will look back and realize how much you want these days back. Before you know he will be getting married. Try to enjoy him because you are going to miss this!". Ok Mom, I get the hint! I think she's trying to tell me something and I haven't been listening!
Tonight I came home and only did 2 things on my to do list so that I could play with Jonathan and have some fun and enjoy him. My dishes are done and so is a bit of laundry but the tornado in my living room is still here.
Here is a link to the video of the song by Trace. It really makes you think and well, he isn't bad eye candy either!
Friday, March 28, 2008
Wednesday, March 26, 2008
The Paranoid Mom
Yes, that is me. I know I have very good reason to be but I still feel silly.
Z still has his rash and Dr. Rob told me to watch it but his bloodwork came back GREAT! His WBC was down to 15.6K and his monocytes were down to 9%. This kid is playing mind games with me.
It seems when I relax, something what I consider bad happens and the paranoia starts all over again.
For now, my little guy is doing well. My sister said she prayed really hard for him on Sunday and I believe that and thank you all for the prayers.
I am reading a book called "when your child hurts" and I am stuck on the one chapter that talks about letting God take on all your burdens. The author is realistic. He doesn't make it sound easy and he doesn't deny your right to feel angry. So, I like it. I am trying hard to let God handle it all and some days I do better than others. I just hope I can learn to do this more and more. It's gonna take time, I still try to take on all the burden of running a house, working full-time and taking care of 2 kids. Mom always said to let the cleaning wait and enjoy the babies but wow, that is hard.
Z is teaching me a lot and I hope that I can learn this lesson pretty quickly so that my boy can get better!
Z still has his rash and Dr. Rob told me to watch it but his bloodwork came back GREAT! His WBC was down to 15.6K and his monocytes were down to 9%. This kid is playing mind games with me.
It seems when I relax, something what I consider bad happens and the paranoia starts all over again.
For now, my little guy is doing well. My sister said she prayed really hard for him on Sunday and I believe that and thank you all for the prayers.
I am reading a book called "when your child hurts" and I am stuck on the one chapter that talks about letting God take on all your burdens. The author is realistic. He doesn't make it sound easy and he doesn't deny your right to feel angry. So, I like it. I am trying hard to let God handle it all and some days I do better than others. I just hope I can learn to do this more and more. It's gonna take time, I still try to take on all the burden of running a house, working full-time and taking care of 2 kids. Mom always said to let the cleaning wait and enjoy the babies but wow, that is hard.
Z is teaching me a lot and I hope that I can learn this lesson pretty quickly so that my boy can get better!
Monday, March 24, 2008
Now a rash
Of course when Dr. Rob said, "call us if he gets a rash", Zachary has to get a rash! I talked to 2 JMML moms and they explained the rash their boys had and the one Mom, to another Zachary, described his rash and it sounds a lot like Zachary's. Of course I know baby's get rashes but when it comes to my little man, I can't let anything just be normal, I have to obsess and freak out.
I called Dr. Rob and then sent the nurse out to do more bloodwork today. I called at 4pm to get the results and wouldn't you know, his vial of blood got lost. Just our luck! They have a tube shoot (like at a bank drive up) that you can send blood samples/whatever from one floor to the next and the manager of the lab believes it is caught in there. She was going to "clean the shoot" and we should have the results tomorrow.
Otherwise he is doing well. Very happy and just has the normal baby fussiness...wants to be held, has gas or is wet and then he laughs. He loves to be talked to. He is eating well and gaining so that is good.
The one mom I talked to at the JMML support group summed up all my feelings very well. I swear I could have written her email myself. I have to admit I get scared going to the support group site but I think that is normal. There are so many little miracles on there and so much knowledge. I get overwhelmed and then I let my mind wander. But they are all SO helpful there and I am glad I found them.
Uh oh, Z is hungry. Here is a new pic:
Friday, March 21, 2008
Happy 4 months Zachary!
Today my little man is 4 months old. I can't believe it. I have to admit that 8 weeks ago I wasn't sure we'd be celebrating this milestone. Yet here we are and I thank God for that.
Yesterday Z was weighed and is now 11lbs and 3oz! What a big boy!!! They did a blood draw and the nurse called to tell me that the counts were good and we'd repeat it all in 2 weeks. This is where I'd call Dr. Rob myself and get the numbers but I didn't want to do that. I had a feeling the numbers would be high and it would make me sad. I base so much on those numbers. So I tried to fight off the urge to call. I mean Z is doing great...eating, laughing, grabbing toys and just a pure joy so how could anything be wrong with him.
Fast forward to today at 945am...I needed to know those numbers, I had to know. I call and Heather tells me that his WBC is 21.6%...HOLY CRAP and his monocytes were 19%...DOUBLE HOLY CRAP! This is the highest his numbers have been since we got out of the hospital! POP! Did you hear that? It was my happy optimistic bubble popping really fast and close to my ear.
I tell Heather how I don't see how they can be good if they are this high so she said she will have Dr. Rob call me. He calls and he expressed similar concerns. He said he isn't freaked out because Z has done this before...go real high and then BAM he's normal again. He is hoping and praying this will happen in 2 weeks. So in 2 weeks we repeat the tests and if it is still high or higher, Z will have more indepth bloodwork done to determine what is next. He explained that just because there is a text book normal range, each individual can still have their own "normal" range and it can be higher than the regular normal. He told me he has never seen a case like Z's so maybe Z is just a higher normal. If I notice a rash, eating or behavioral changes I am to call Dr. Rob and birng him in.
For now, we are to still hold off on his normal vaccines. I asked him about Noonan's Syndrome. I discovered that Noonans and JMML seem to go hand in hand. He said this did cross his mind but Z does not have the facial features and he truly doesn't think this is our problem. My reason for asking this is b/c of his heart murmur and undescended testicles. I know both are VERY normal in a baby and he said that Noonans can result in pulmonary stenosis and this would have been detected in the echocardiogram he had at the hosptial. So I just need to have Dr. Kate do another echo to look at his murmur and this is routine for newborns w/murmurs and is done at 4 or 6 months. I will request it at 4 months.
Even though my bubble had bursted, Dr. Rob made me feel good about things. Yes will still take it day by day and I need to resume normal and not put stuff on hold for a "what if". He did explain that the monocytes have to do with the white cells, I previously thought it was the red, and they too can increase w/a viral infection. So who knows. My little mystery man is just that a mystery!
Happy 4 months big guy!
Yesterday Z was weighed and is now 11lbs and 3oz! What a big boy!!! They did a blood draw and the nurse called to tell me that the counts were good and we'd repeat it all in 2 weeks. This is where I'd call Dr. Rob myself and get the numbers but I didn't want to do that. I had a feeling the numbers would be high and it would make me sad. I base so much on those numbers. So I tried to fight off the urge to call. I mean Z is doing great...eating, laughing, grabbing toys and just a pure joy so how could anything be wrong with him.
Fast forward to today at 945am...I needed to know those numbers, I had to know. I call and Heather tells me that his WBC is 21.6%...HOLY CRAP and his monocytes were 19%...DOUBLE HOLY CRAP! This is the highest his numbers have been since we got out of the hospital! POP! Did you hear that? It was my happy optimistic bubble popping really fast and close to my ear.
I tell Heather how I don't see how they can be good if they are this high so she said she will have Dr. Rob call me. He calls and he expressed similar concerns. He said he isn't freaked out because Z has done this before...go real high and then BAM he's normal again. He is hoping and praying this will happen in 2 weeks. So in 2 weeks we repeat the tests and if it is still high or higher, Z will have more indepth bloodwork done to determine what is next. He explained that just because there is a text book normal range, each individual can still have their own "normal" range and it can be higher than the regular normal. He told me he has never seen a case like Z's so maybe Z is just a higher normal. If I notice a rash, eating or behavioral changes I am to call Dr. Rob and birng him in.
For now, we are to still hold off on his normal vaccines. I asked him about Noonan's Syndrome. I discovered that Noonans and JMML seem to go hand in hand. He said this did cross his mind but Z does not have the facial features and he truly doesn't think this is our problem. My reason for asking this is b/c of his heart murmur and undescended testicles. I know both are VERY normal in a baby and he said that Noonans can result in pulmonary stenosis and this would have been detected in the echocardiogram he had at the hosptial. So I just need to have Dr. Kate do another echo to look at his murmur and this is routine for newborns w/murmurs and is done at 4 or 6 months. I will request it at 4 months.
Even though my bubble had bursted, Dr. Rob made me feel good about things. Yes will still take it day by day and I need to resume normal and not put stuff on hold for a "what if". He did explain that the monocytes have to do with the white cells, I previously thought it was the red, and they too can increase w/a viral infection. So who knows. My little mystery man is just that a mystery!
Happy 4 months big guy!
Wednesday, March 19, 2008
Happy Birthday Mom!
I can't believe you have been gone for 6 months. I have the urge to pick up the phone and call you so many times a day. I want to talk to you about the boys and get your advice. I miss you so much.
I can't imagine this getting any easier on any of us. You are loved and missed so much. Jonathan still talks about you and Buster in Heaven playing baseball. No ofense Mom, but the thought of that cracks me up.
Thank you for blessing me with such a wonderful family. Without their love I would not survive all the ups and downs of Zachary's health. And thank you for helping me get through this. I need you and I need your strength to help me do what is right for the boys. I know you will help protect Zachary as best you can.
I love you mom and thank you so much for blessing my life. Happy Birthday! Now go enjoy a LOT of cake! Eat all you want because I am sure in Heaven there is no diabetes, so I hope you enjoy all the cake you want!
I miss you!
I can't imagine this getting any easier on any of us. You are loved and missed so much. Jonathan still talks about you and Buster in Heaven playing baseball. No ofense Mom, but the thought of that cracks me up.
Thank you for blessing me with such a wonderful family. Without their love I would not survive all the ups and downs of Zachary's health. And thank you for helping me get through this. I need you and I need your strength to help me do what is right for the boys. I know you will help protect Zachary as best you can.
I love you mom and thank you so much for blessing my life. Happy Birthday! Now go enjoy a LOT of cake! Eat all you want because I am sure in Heaven there is no diabetes, so I hope you enjoy all the cake you want!
I miss you!
Monday, March 17, 2008
No news is good news!
Well for the most part all I have to report is good news! Z is up another 7 oz in 7 days and is right on track in the gaining area. He is 10lbs and 14oz and is finally needing to go up a size in his clothes!
He truly is a happy little guy and just lights up when he sees Jonathan. He is developing quite well but does have a few delays. He can't support his head 100% yet but he is trying. He did manage to pull the 2 stitches out of his broviac line. They were the stitches to hold it in place. He also pulled a little bit of the line out as well. :-( But the nurse said this is common and we just double taped him. It appears that is his favorite spot to grab!!! Also, because his blood counts were so good on 3/6, he only has to have blood drawn every 2 weeks! This is a huge milestone in my book!!!
I have not asked Dr. Rob how long the line stays in but I am assuming it will be at least 6 more months. I am fine w/that. I want my little man to be fine before they take it out. I have a few question for Dr. Rob but haven't made an appt or called him yet. There are 2 other illnesses that appear to go along w/JMML. Not in all cases but it can happen. One is called Noonan's Syndrome and the other is NF1. I have read up on these and he does have some of the symptoms of each or it could simply be that this is the way he is and not be related to those illnesses at all. This is why I fear calling Dr. Rob. I want to enjoy the fact that JMML is not rearing it's ugly head yet. I don't want to rock the boat just yet. In time I will ask these questions.
Jonathan and I are battling colds. We thought Z had it too but if he did it came and went within 48 hours! His reflux cough is getting a bit worse so we may have to call the GI doc again. I was out yesterday with him and several people made comments on how small he was and "Oh my listen to that cough? Does he have a cold?". I swear sometimes people look at me like I'm a whack job b/c he looks like he is 4 wks old and sounds like he has the croup or something. I bit my tongue and said he was 4 months old (well this friday) and had reflux! I have enough to worry about with him and don't need other people adding to my worries. Yes, I am starting to get a little bitter about all this. I tried for so long not to be but I am so tired of worrying, getting myself so upset and angry and taking it out on the wrong people. I don't sleep at night and can barely function. Just when I feel good about Z, something or someone freaks me out. This past weekend was really rough on all of us.
Anyway, that is our update and we should have more this weekend! Have a great week and enjoy some green beer!!!
He truly is a happy little guy and just lights up when he sees Jonathan. He is developing quite well but does have a few delays. He can't support his head 100% yet but he is trying. He did manage to pull the 2 stitches out of his broviac line. They were the stitches to hold it in place. He also pulled a little bit of the line out as well. :-( But the nurse said this is common and we just double taped him. It appears that is his favorite spot to grab!!! Also, because his blood counts were so good on 3/6, he only has to have blood drawn every 2 weeks! This is a huge milestone in my book!!!
I have not asked Dr. Rob how long the line stays in but I am assuming it will be at least 6 more months. I am fine w/that. I want my little man to be fine before they take it out. I have a few question for Dr. Rob but haven't made an appt or called him yet. There are 2 other illnesses that appear to go along w/JMML. Not in all cases but it can happen. One is called Noonan's Syndrome and the other is NF1. I have read up on these and he does have some of the symptoms of each or it could simply be that this is the way he is and not be related to those illnesses at all. This is why I fear calling Dr. Rob. I want to enjoy the fact that JMML is not rearing it's ugly head yet. I don't want to rock the boat just yet. In time I will ask these questions.
Jonathan and I are battling colds. We thought Z had it too but if he did it came and went within 48 hours! His reflux cough is getting a bit worse so we may have to call the GI doc again. I was out yesterday with him and several people made comments on how small he was and "Oh my listen to that cough? Does he have a cold?". I swear sometimes people look at me like I'm a whack job b/c he looks like he is 4 wks old and sounds like he has the croup or something. I bit my tongue and said he was 4 months old (well this friday) and had reflux! I have enough to worry about with him and don't need other people adding to my worries. Yes, I am starting to get a little bitter about all this. I tried for so long not to be but I am so tired of worrying, getting myself so upset and angry and taking it out on the wrong people. I don't sleep at night and can barely function. Just when I feel good about Z, something or someone freaks me out. This past weekend was really rough on all of us.
Anyway, that is our update and we should have more this weekend! Have a great week and enjoy some green beer!!!
Monday, March 10, 2008
March 9th
March 9th is a day of many birthdays. My BIL John and my nephew Josh. (Happy Birthday!) It is also the birthday of a very speical boy, Thomas. He would have been 3 YO this year. Unfortunately, Thomas is not here to celebrate his brithday with his Mommy and Daddy.
Thomas taught me so much in his brief little life. His Mom and Dad are 2 very wonderful, funny, smart and caring people. I will be thinking of you all this week and Jonathan and I are sending prayers to Thomas.
In my mind, I picture Thomas and his little buddy Ryan digging into some birthday cake and playing with some balloons. I also imagine my Mom and my dog Buster stopping by to wish Thomas a happy birthday. Call me crazy, but I can see that very clearly in my mind.
My mom's birthday is on the 19th, the first one without her here. My SIL Kim suggested we start a tradition and bring food to a battered Women's and Children's shelter. I love this idea. She also suggested a cake and some crayons and stuff. The kids will love that. I decided that I will not only do this for my Mom but I will also do it in memory of sweet Thomas. I know his Mom would love that! And I love the idea of sharing this tradition for Mom with Thomas.
I think I will donate some books and/or diapers and formula for Thomas and then the other stuff for Mom. What a great way to honor those not with us and to help those less fortunate. I think Mom and Thomas would like that!
Kristin and Sandy...our thoughts and prayers are with you both (and Thomas) everyday, but especially this week. Many hugs to you both!
Thomas taught me so much in his brief little life. His Mom and Dad are 2 very wonderful, funny, smart and caring people. I will be thinking of you all this week and Jonathan and I are sending prayers to Thomas.
In my mind, I picture Thomas and his little buddy Ryan digging into some birthday cake and playing with some balloons. I also imagine my Mom and my dog Buster stopping by to wish Thomas a happy birthday. Call me crazy, but I can see that very clearly in my mind.
My mom's birthday is on the 19th, the first one without her here. My SIL Kim suggested we start a tradition and bring food to a battered Women's and Children's shelter. I love this idea. She also suggested a cake and some crayons and stuff. The kids will love that. I decided that I will not only do this for my Mom but I will also do it in memory of sweet Thomas. I know his Mom would love that! And I love the idea of sharing this tradition for Mom with Thomas.
I think I will donate some books and/or diapers and formula for Thomas and then the other stuff for Mom. What a great way to honor those not with us and to help those less fortunate. I think Mom and Thomas would like that!
Kristin and Sandy...our thoughts and prayers are with you both (and Thomas) everyday, but especially this week. Many hugs to you both!
Friday, March 7, 2008
Fat and Sassy
Zachary is now fat and sassy! He has gained 7oz in 7 days and is up to 10lbs 7oz! He is very vocal these days and just squeals in delight, especially when Jonathan comes around. He lights up when he sees him!
His WBC is up to 15.9K and his monocytes are in the normal range of 8%. Dr. Rob is off today but is going to call me on Monday to see when we need to come in to see him again.
His spleen is normal (if I didn't mention that yet) and he is doing great!
I have decided to stop dwelling on every little move he makes and enjoy him. I swear he has grown so much and is doing so much these days and I feel like I sit and worry and let it all pass me by. Not any more. Oh I may have already said all this so forgive me. I am a bit tired.
We got about 10" of snow this week and Jonathan and I played in it. That lasted all of 15 minutes and then his glove came off. I was ready to come in anyway.
Dinner is waiting so I have to go. Have a great evening!
His WBC is up to 15.9K and his monocytes are in the normal range of 8%. Dr. Rob is off today but is going to call me on Monday to see when we need to come in to see him again.
His spleen is normal (if I didn't mention that yet) and he is doing great!
I have decided to stop dwelling on every little move he makes and enjoy him. I swear he has grown so much and is doing so much these days and I feel like I sit and worry and let it all pass me by. Not any more. Oh I may have already said all this so forgive me. I am a bit tired.
We got about 10" of snow this week and Jonathan and I played in it. That lasted all of 15 minutes and then his glove came off. I was ready to come in anyway.
Dinner is waiting so I have to go. Have a great evening!
Sunday, March 2, 2008
No RSV!
Good news all around...the RSV test was negative and his WBC was down to 13.9K and his monocytes down to 11%. He had a rash but I think it was one of them flukey baby things.
I meant to update earlier but we had some nice weather and took advantage of it doing yardwork.
Z is doing well. I am now convinced his cough is from his reflux as I've read a million times but never accepted. I counted his breaths after eating and they were around 53 per minute. But 30 minutes later it was 37 so I am convinced it is the reflux. He is very happy and content.
We go tomorrow for his abdominal US at 2pm CST. I won't know anything until his doc gets the results but I will update soon!
I meant to update earlier but we had some nice weather and took advantage of it doing yardwork.
Z is doing well. I am now convinced his cough is from his reflux as I've read a million times but never accepted. I counted his breaths after eating and they were around 53 per minute. But 30 minutes later it was 37 so I am convinced it is the reflux. He is very happy and content.
We go tomorrow for his abdominal US at 2pm CST. I won't know anything until his doc gets the results but I will update soon!
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