Friday Zachary had some stomach bug and I was so glad I had the day off because he was just puking non stop for about 5 hours. He then got some sort of cold. He is doing ok but just a bit snotty and whiney at times.
Anyway, on Friday I made a few phone calls and got him in to see a geneticist in February. They will call if there is a cancellation.
The urologists office called and set up his surgery for Wednesday, September 10th. I have to take him to his primary doc next week to make sure he is ok...no fever...and then the hospital will call me on 9/9 with a time and instructions. Jonathan will spend the day as he always does, with Chelsea and Arianna and then Jason and I will take Zachary to the hospital. The surgery can take 2 hrs and should be outpatient.
On Monday, 9/8, he will go see Dr. Rob for his monthly bloodwork. Fingers crossed that it all goes well and his blood work is normal.
So it looks like the next two weeks will be busy! I will update as I can.
Sunday, August 31, 2008
Thursday, August 28, 2008
9 Month Appointment/Preschool
Today we had Jonathan's preschool open house. Chelsea and I took him up there and at first he didn't want me to leave his sight but then he began playing more. I think he was a bit intimidated by some of the kids b/c he didn't know them. It's funny because he was a good 2 - 3 inches taller than nearly all of them! The teachers were wonderful and it looked like so much fun. So many different activities. I wish I could go. We told him that next week he will go and stay for a bit but the mommies couldn't stay. I think he'll be okay.
We then had Zachary's 9 month appt. Everyone commented on how big he had gotten and how HUGE Jonathan was. We weighed him in at 51lbs...fully clothed. I think he is 42 or 43 inches tall. Dr. Kate was even impressed. He got a bit wild and she said, "Glad he's going home with you!". Ha! She laughed and said she has days when she takes her 2 kids out alone and feels like crying. Glad to know I'm not alone.
Well Zachary weighed in at 16lbs and 14oz with a diaper on. He is in the 5th-10th % and has fallen down a bit on his chart. At 6 months he was 15lbs and 1 oz. So he barely gained 2 lbs in 3 months. Not good. He is 28.5" long and is in the 50th % for that. His little peanut head is in the 5th %.
I addressed every concern I had and the first was his soft spot...still huge and she said that was reported in the hospital report and she just wants to watch it.
His lower part of his spine seems like it sticks out. She said she doesn't think it is curved and that it is b/c he is so skinny.
Not sitting up...while he is making progress he still is not doing it. She will gladly send him to physical therapy when I'm ready. I may wait a few weeks because he seems to be doing better and the parents as teachers lady gave us some good ideas for helping him along.
My ultimate concern is that he has NF1 or Noonan Syndrome (NS). Both seem to effect (in some way) kids with JMML and that is how I found out about them. He has the one symptom of NF1...the cafe au lait spots. As for NS, I say he has several and Dr. Kate agreed. The main symptom there is a heart defect...pulmonary stenosis. He does have a murmur and 2 echocardiograms confirmed it was just a murmur. But you see, NS has a huge spectrum of symptoms. Some people do not know they have it and others, well they have it bad unfortunately. Another symptom is undescended testicles...check. Low set ears...check. Droopy eye lids/lazy eye...His eyelids may be a bit droopy or is it hereditary? That's the thing, lots of these symptoms can be hereditary traits as well. NS can also cause (if cause is the right word) developmental and mental delays and mental retardation...obviously I would take any or all of these over JMML.
Dr. Kate will always say, "what is your Mommy gut telling you?"...this time, it's telling me that I'm afraid for my baby boy. I'm afraid of 2 things...the worst isn't over yet and that he truly has JMML and something is "hiding" it some how and the not so bad (I hope) is that he has NF1, NS or some combo of the 2. Unfortunately, my Mommy gut is not telling me that it is nothing.
She advised me to call a geneticist and then we may call in a neurologist as well. For some reason, these 2 steps are really hard for me. Maybe deep down I do know that something is wrong or maybe I'm just really sad because I wish (so badly) that my mom was here. With the first anniversary of death approaching, I'm finding everything a little harder these days.
We then had Zachary's 9 month appt. Everyone commented on how big he had gotten and how HUGE Jonathan was. We weighed him in at 51lbs...fully clothed. I think he is 42 or 43 inches tall. Dr. Kate was even impressed. He got a bit wild and she said, "Glad he's going home with you!". Ha! She laughed and said she has days when she takes her 2 kids out alone and feels like crying. Glad to know I'm not alone.
Well Zachary weighed in at 16lbs and 14oz with a diaper on. He is in the 5th-10th % and has fallen down a bit on his chart. At 6 months he was 15lbs and 1 oz. So he barely gained 2 lbs in 3 months. Not good. He is 28.5" long and is in the 50th % for that. His little peanut head is in the 5th %.
I addressed every concern I had and the first was his soft spot...still huge and she said that was reported in the hospital report and she just wants to watch it.
His lower part of his spine seems like it sticks out. She said she doesn't think it is curved and that it is b/c he is so skinny.
Not sitting up...while he is making progress he still is not doing it. She will gladly send him to physical therapy when I'm ready. I may wait a few weeks because he seems to be doing better and the parents as teachers lady gave us some good ideas for helping him along.
My ultimate concern is that he has NF1 or Noonan Syndrome (NS). Both seem to effect (in some way) kids with JMML and that is how I found out about them. He has the one symptom of NF1...the cafe au lait spots. As for NS, I say he has several and Dr. Kate agreed. The main symptom there is a heart defect...pulmonary stenosis. He does have a murmur and 2 echocardiograms confirmed it was just a murmur. But you see, NS has a huge spectrum of symptoms. Some people do not know they have it and others, well they have it bad unfortunately. Another symptom is undescended testicles...check. Low set ears...check. Droopy eye lids/lazy eye...His eyelids may be a bit droopy or is it hereditary? That's the thing, lots of these symptoms can be hereditary traits as well. NS can also cause (if cause is the right word) developmental and mental delays and mental retardation...obviously I would take any or all of these over JMML.
Dr. Kate will always say, "what is your Mommy gut telling you?"...this time, it's telling me that I'm afraid for my baby boy. I'm afraid of 2 things...the worst isn't over yet and that he truly has JMML and something is "hiding" it some how and the not so bad (I hope) is that he has NF1, NS or some combo of the 2. Unfortunately, my Mommy gut is not telling me that it is nothing.
She advised me to call a geneticist and then we may call in a neurologist as well. For some reason, these 2 steps are really hard for me. Maybe deep down I do know that something is wrong or maybe I'm just really sad because I wish (so badly) that my mom was here. With the first anniversary of death approaching, I'm finding everything a little harder these days.
Tuesday, August 26, 2008
I left him with a stranger
Ok well it wasn't really a stranger, it was his Awana teacher and my sister, brother in law and about 6 of my nieces and nephews were there but STILL I dropped him off and left! It was so hard.
Jonathan was so excited about AWANA but when he realized I wasn't staying, he grabbed my leg and clung to me. I remember doing that to my Mom. I never wanted her to leave my side. I promised him I'd be back. After about 10 minutes I was able to leave and as I looked back at him I saw him looking at me with those big brown eyes. I ran to the car where Jason and Zachary were waiting. We went to dinner and the entire time I kept thinking about the fact that I dropped my son off with someone he didn't know and how scared he must be. Mind you, Ms. Christa and Ms. Amy were very nice ladies but I hate seeing that boy sad.
As soon as the food was served I asked for the check. I inhaled my food and we practically ran from the restaurant...Jason's food left in a doggie bag with us. He ate too slow. I needed to be by my baby. I tried so hard to watch him from the window but couldn't see him. I saw my sister, a niece and a nephew walk by and figured if he wasn't attached to their leg, then he must have done ok.
He saw me and said, "Mommy I made a picture for you!" and smiled his gorgeous smile. Ms. Christa said he did just fine...no tears and it was good I didn't come back in like I had planned. He was ready to home (he had to go potty) and he told me how much fun he had and how Ms. Christa was so happy to see him! He wants to go back and said he knows Mommy can't stay but that Mommy will always be back to get him! One down, one to go.
Next week: Preschool! (Not sure if I can handle that one!)
As for little Z man well he had another Parents As Teacher meeting and she said she was so happy to see so much improvement with him and him trying to sit up. He can't quite do it yet but has made huge progress in one month. She gave us some exercises to do with him. However, he proudly showed off his ability to do "So Big!" for her. Here is a video (it took me a week to get it!) and please forgive my high pitched baby talk voice!
Jonathan was so excited about AWANA but when he realized I wasn't staying, he grabbed my leg and clung to me. I remember doing that to my Mom. I never wanted her to leave my side. I promised him I'd be back. After about 10 minutes I was able to leave and as I looked back at him I saw him looking at me with those big brown eyes. I ran to the car where Jason and Zachary were waiting. We went to dinner and the entire time I kept thinking about the fact that I dropped my son off with someone he didn't know and how scared he must be. Mind you, Ms. Christa and Ms. Amy were very nice ladies but I hate seeing that boy sad.
As soon as the food was served I asked for the check. I inhaled my food and we practically ran from the restaurant...Jason's food left in a doggie bag with us. He ate too slow. I needed to be by my baby. I tried so hard to watch him from the window but couldn't see him. I saw my sister, a niece and a nephew walk by and figured if he wasn't attached to their leg, then he must have done ok.
He saw me and said, "Mommy I made a picture for you!" and smiled his gorgeous smile. Ms. Christa said he did just fine...no tears and it was good I didn't come back in like I had planned. He was ready to home (he had to go potty) and he told me how much fun he had and how Ms. Christa was so happy to see him! He wants to go back and said he knows Mommy can't stay but that Mommy will always be back to get him! One down, one to go.
Next week: Preschool! (Not sure if I can handle that one!)
As for little Z man well he had another Parents As Teacher meeting and she said she was so happy to see so much improvement with him and him trying to sit up. He can't quite do it yet but has made huge progress in one month. She gave us some exercises to do with him. However, he proudly showed off his ability to do "So Big!" for her. Here is a video (it took me a week to get it!) and please forgive my high pitched baby talk voice!
Wednesday, August 20, 2008
Various Updates
Zachary was referred from one Urologist to another for his undescended testicles (I am sure when he is 9 years old he will kill me for sharing this info) due to the fact that they are still up in the abdominal area. We met with a very nice doctor who informed me that he would like to do the surgery shortly after his 1st birthday. They are going to schedule it and give me a call. Let's hope it is in 2008 so that it's FREE! I know that sounds petty but seriously, it would be less stress for us!!!
Anyway it will be done as outpatient and he will have 4 incisions...2 in the abdominal area and 2 in the scrotum area. I must admit, I am ready to get this over with.
As for developments, Z is trying super hard to sit up on his own and can manage it for a maybe a minute here and there. He now does "so big" but won't do it on command for the camera!!! He is starting seperation anxiety with me, Jason and Chelsea. And that is just so much fun...NOT! He is rolling and doing the army crawl a little bit. Overall, the little guy is doing wonderful.
My big little guy is gearing up to start preschool. I had the parent orientation and since it is a co-op program (at a nearby Lutheran Church) I have to volunteer to work the classroom and fundraisers 6-8 times a year. YIKES! I am stressing over that but from what I can tell the program is incredible. If Jonathan likes it, I will make it work. He will go Tues/Thurs from 9-12 and Chelsea has agreed to take him and pick him up. I am so grateful that her and Sally are able to work this out for us. I think it will be great for Jonathan. We have open house on 8/28 and then he starts on 9/2. I am really nervous and expect to shed a few tears.
We also signed him up for AWANA at my sister's church. He is really excited and told Grandma and Grandpa that he met his teacher Ms. Christa and that she was really nice. It is only one night a week so I think he will do okay there. He has lots of new and exciting things headed his way.
I just can't believe my babies are getting so big.
Anyway it will be done as outpatient and he will have 4 incisions...2 in the abdominal area and 2 in the scrotum area. I must admit, I am ready to get this over with.
As for developments, Z is trying super hard to sit up on his own and can manage it for a maybe a minute here and there. He now does "so big" but won't do it on command for the camera!!! He is starting seperation anxiety with me, Jason and Chelsea. And that is just so much fun...NOT! He is rolling and doing the army crawl a little bit. Overall, the little guy is doing wonderful.
My big little guy is gearing up to start preschool. I had the parent orientation and since it is a co-op program (at a nearby Lutheran Church) I have to volunteer to work the classroom and fundraisers 6-8 times a year. YIKES! I am stressing over that but from what I can tell the program is incredible. If Jonathan likes it, I will make it work. He will go Tues/Thurs from 9-12 and Chelsea has agreed to take him and pick him up. I am so grateful that her and Sally are able to work this out for us. I think it will be great for Jonathan. We have open house on 8/28 and then he starts on 9/2. I am really nervous and expect to shed a few tears.
We also signed him up for AWANA at my sister's church. He is really excited and told Grandma and Grandpa that he met his teacher Ms. Christa and that she was really nice. It is only one night a week so I think he will do okay there. He has lots of new and exciting things headed his way.
I just can't believe my babies are getting so big.
Monday, August 11, 2008
Butterflies
Today is the 3rd anniversary of the death of my dear friend's son. My heart breaks for her. I am so happy she has a little girl now but I know she still misses her sweet son so terribly much.
The past few weeks my sister and I have been talking about butterflies, hummingbirds and Mom. Random thoughts bring back memories of Mom and she told me how she saw several butterflies and then as we were at my dad's house we saw a hummingbird. Mom loved watching the hummingbirds.
This past weekend I was camping with a friend and her family and I saw several butterflies. Jason's Aunt told me she thought that when you see a butterfly it was a message from a loved one that passed away. I saw several this past weekend.
We had a great weekend. It could not have been better. Great company, happy kids, seeing family and just being together. I'll make a separate post later.
Sweet Ryan, you will never be forgotten. You touched many lives in your short and sweet life. You are one special little Angel and are missed and loved so very much.
Sherry, Mike and Megan...many hugs to you all. Thank you for sharing your sweet little boy with me. He will never be forgotten.
The past few weeks my sister and I have been talking about butterflies, hummingbirds and Mom. Random thoughts bring back memories of Mom and she told me how she saw several butterflies and then as we were at my dad's house we saw a hummingbird. Mom loved watching the hummingbirds.
This past weekend I was camping with a friend and her family and I saw several butterflies. Jason's Aunt told me she thought that when you see a butterfly it was a message from a loved one that passed away. I saw several this past weekend.
We had a great weekend. It could not have been better. Great company, happy kids, seeing family and just being together. I'll make a separate post later.
Sweet Ryan, you will never be forgotten. You touched many lives in your short and sweet life. You are one special little Angel and are missed and loved so very much.
Sherry, Mike and Megan...many hugs to you all. Thank you for sharing your sweet little boy with me. He will never be forgotten.
Tuesday, August 5, 2008
Brotherly Love
I love watching the boys interact and the bond they have is so very strong and incredible. I write in their journals that they DO love each other because I want them to be reminded of this bond if they should ever come to a point where the bond isn't so strong...as siblings do!
This next video is not great quality and it was hard to hold the camera and the baby so forgive me for the bad shot but I think you can still see the way Z looks at JD and the love they share. And all the fun I am going to have in the years to come when they gang up on me!!!
This next video is not great quality and it was hard to hold the camera and the baby so forgive me for the bad shot but I think you can still see the way Z looks at JD and the love they share. And all the fun I am going to have in the years to come when they gang up on me!!!
Now, imagine when I have two doing this...
And last but not least, Zachary really has 2 teeth, not one and he is doing a very funky army crawl!
Saturday, August 2, 2008
What, what did you say?
"Mama". That's right after Zachary ate his 5am bottle I put him in bed with me. He was babbling away and I started to doze off. then I heard that sweet little word..."Mama. Mama. Mama." I know, I don't think he said it because he knows what it mean but still, what a sweet little word.
But wait, that's not all...as I laid there playing with him I put my finger in his mouth and low and behold, the boy has a tooth! It is barely poking through the skin but it's there. He knows it's there too because he keeps rubbing his tongue on it. No swollen gums and not indication of a tooth at all and then BAM there it is!
I wonder if all his teeth will come in this easy? ha ha ha...a girl can dream right?
But wait, that's not all...as I laid there playing with him I put my finger in his mouth and low and behold, the boy has a tooth! It is barely poking through the skin but it's there. He knows it's there too because he keeps rubbing his tongue on it. No swollen gums and not indication of a tooth at all and then BAM there it is!
I wonder if all his teeth will come in this easy? ha ha ha...a girl can dream right?
Friday, August 1, 2008
August
In St. Louis, August means HOT! Temps in the 100's, air so thick it sucks the life out of you and the constant sound of the air conditioner running.
In my heart, it means Mom and Dad's anniversary. August 3rd. Last year it was such a busy happy time for all of us as we prepared to celebrate their 50 years of marriage. We watched Mom dance with Dad for the first time in many years. This year, we will go to Dad's in the 100 degree weather and barbecue. Are we doing it for Dad, or for us? I don't know.
The past week has been a rough one. Jason's Aunt Nancy passed away and she was a great woman and she was loved by many. Even if I hadn't known her, I would have known how incredible she was just by looking at the pictures. Actually, his entire family is pretty great. No, I'm not saying that because some of them read my blog, ha ha. I am saying that because they all welcomed me into their family without any questions. They were all so kind and treated me as one of them.
His Uncle Denny (Nancy's husband) passed away in December. I can't imagine the pain their kids and grandkids have felt and all they have gone through...losing both parents within 8 months. It is not fair. As I watched the slide show I saw their wedding pictures and I imagined the 2 of them in heaven shining down on their family and letting them know it's okay, they are together again.
I also noticed how strong and dominant those Foster genes are! I could see Jason and even Zachary in the pictures of Uncle Denny.
This was the first funeral I attended since Mom's and I tried so hard to be strong but in the end, I used the boys as my excuse and we sat in the "cry room" at the funeral home. It was nice because I could hear the service and both boys fell asleep. And well, I avoided a potential breakdown that I didn't want to happen because it just wasn't the place for it. Now that I am back in St. Louis, I had my breakdown. Jonathan told me it was okay, Grandma would be here soon. It's funny because I will think I'm doing okay and then I stumble across something, an item, memory, song, tv show and the pain comes flying back at me.
Jonathan has a "special box" where I keep cards and stuff that he has gotten from family and friends. We opened it to look at it and I found the card Mom gave me at his shower. She also gave me to sets of baby booties. In the card it said how she found these booties and that Grandma Keeven made them and since I was the youngest grandchild she would want me to have them. She then wrote, "I know Grandma is looking down on us.". Yes and now the 2 of them are looking down on us. Too bad it hurt so much.
I promised I'd post more frequently but I forgot so now you get a long post about my sappy feelings and then the last part about the boys. The boys were total and complete angels for the trip up to Iowa and back. I never knew how good Jonathan could be. I was so proud. He can be a very polite and loving child. He was happy to see his great grandma and great papa. "They have blocks, stairs and puzzles!" I know it did Grandma (and everyone there) well to see Zachary and see how well he is doing. I just didn't realize that if you don't see him everyday, you could really think the worst of his situation. I am glad we went up there just sorry it was for a funeral. I wish we had made it up there sooner. We are heading back up this Friday to meet my friend Alana and her family. We are going camping! She is one of my online mommy friends and I am so excited to meet her.
Zachary truly is doing well. I still read up on JMML and NF1 because while I try not to obsess on it and as much as I want to believe the worst is behind us, I never will. I know that kids with bone marrow transplants can still have JMML come back. They say it never really goes away. No i don't know if had it but that doesn't ease my mind. However, my sweet happy baby is just that...sweet and ever so happy. His smile lights up a room. He is tiny and precious. I had the parents as teacher lady come out to evaluate him and she feels he is right on target. He is a wee bit behind on sitting up but she said to give it another month or 2 and then we may need to get some physical therapy.
She was going to refer him to a statewide program but our oh so wonderful (sacrasm) Governor, Matt Blunt, decided that he didn't feel the MO First Steps or Early Intervention Program was very important so he cut the program. What a swell guy! Glad I voted for him! So because of him, kids won't even qualify for an evaluation until they are 4 months behind on a milestone. I mean really, what an idiot. I just don't see how such a wonderful program can be treated so poorly. Thank goodness he felt he did everything he set out to do so there is no need for him to run for office again. Are you kidding me? What an ego!
In my heart, it means Mom and Dad's anniversary. August 3rd. Last year it was such a busy happy time for all of us as we prepared to celebrate their 50 years of marriage. We watched Mom dance with Dad for the first time in many years. This year, we will go to Dad's in the 100 degree weather and barbecue. Are we doing it for Dad, or for us? I don't know.
The past week has been a rough one. Jason's Aunt Nancy passed away and she was a great woman and she was loved by many. Even if I hadn't known her, I would have known how incredible she was just by looking at the pictures. Actually, his entire family is pretty great. No, I'm not saying that because some of them read my blog, ha ha. I am saying that because they all welcomed me into their family without any questions. They were all so kind and treated me as one of them.
His Uncle Denny (Nancy's husband) passed away in December. I can't imagine the pain their kids and grandkids have felt and all they have gone through...losing both parents within 8 months. It is not fair. As I watched the slide show I saw their wedding pictures and I imagined the 2 of them in heaven shining down on their family and letting them know it's okay, they are together again.
I also noticed how strong and dominant those Foster genes are! I could see Jason and even Zachary in the pictures of Uncle Denny.
This was the first funeral I attended since Mom's and I tried so hard to be strong but in the end, I used the boys as my excuse and we sat in the "cry room" at the funeral home. It was nice because I could hear the service and both boys fell asleep. And well, I avoided a potential breakdown that I didn't want to happen because it just wasn't the place for it. Now that I am back in St. Louis, I had my breakdown. Jonathan told me it was okay, Grandma would be here soon. It's funny because I will think I'm doing okay and then I stumble across something, an item, memory, song, tv show and the pain comes flying back at me.
Jonathan has a "special box" where I keep cards and stuff that he has gotten from family and friends. We opened it to look at it and I found the card Mom gave me at his shower. She also gave me to sets of baby booties. In the card it said how she found these booties and that Grandma Keeven made them and since I was the youngest grandchild she would want me to have them. She then wrote, "I know Grandma is looking down on us.". Yes and now the 2 of them are looking down on us. Too bad it hurt so much.
I promised I'd post more frequently but I forgot so now you get a long post about my sappy feelings and then the last part about the boys. The boys were total and complete angels for the trip up to Iowa and back. I never knew how good Jonathan could be. I was so proud. He can be a very polite and loving child. He was happy to see his great grandma and great papa. "They have blocks, stairs and puzzles!" I know it did Grandma (and everyone there) well to see Zachary and see how well he is doing. I just didn't realize that if you don't see him everyday, you could really think the worst of his situation. I am glad we went up there just sorry it was for a funeral. I wish we had made it up there sooner. We are heading back up this Friday to meet my friend Alana and her family. We are going camping! She is one of my online mommy friends and I am so excited to meet her.
Zachary truly is doing well. I still read up on JMML and NF1 because while I try not to obsess on it and as much as I want to believe the worst is behind us, I never will. I know that kids with bone marrow transplants can still have JMML come back. They say it never really goes away. No i don't know if had it but that doesn't ease my mind. However, my sweet happy baby is just that...sweet and ever so happy. His smile lights up a room. He is tiny and precious. I had the parents as teacher lady come out to evaluate him and she feels he is right on target. He is a wee bit behind on sitting up but she said to give it another month or 2 and then we may need to get some physical therapy.
She was going to refer him to a statewide program but our oh so wonderful (sacrasm) Governor, Matt Blunt, decided that he didn't feel the MO First Steps or Early Intervention Program was very important so he cut the program. What a swell guy! Glad I voted for him! So because of him, kids won't even qualify for an evaluation until they are 4 months behind on a milestone. I mean really, what an idiot. I just don't see how such a wonderful program can be treated so poorly. Thank goodness he felt he did everything he set out to do so there is no need for him to run for office again. Are you kidding me? What an ego!
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