I had an appointment for Z to see Dr. Kate today. Of course the awful snow storm didn't help but we managed to get there after a long 45 minute commute when we are what, 5 miles from the office? Nice!
Anyway, I told Dr. Kate that he has been congested with a snotty nose since LAST Saturday and I was pretty much at my witts end and wanted answers not another RX. She listened to Z and said yes that he sounded gunky but she didn't suspect allergies as he was a bit too young for those. She suspects that his bronchial airways are irritated and she agreed that a 5th RX in just about 5 months was not the route we should take. So she prescribed him an inhaler. He gets 2 puffs every 6 hours and I am to call Monday and report how he is doing. She thinks that because he had the pnuemonia and then bronchitis and the croup that he may just be super sensitive and irritated. Works for me! So he has had 2 treatments tonight and is sleeping w/the vaporizer going strong. After the 45 min ride home I opted to stay home and take a personal day. I was exhausted. Plus Jonathan so badly wanted us to go sledding. And we did!
While there she told me that Dr. P (Geneticist) sent her a very nice and informative letter about our consultation with her. I told her I was annoyed w/no results from the neurosurgeon and she said, "Oh I have the results!". Basically he said that Z's fontanel (soft spot) was large for his age but otherwise his little noggin and brain looked fine! So where do I go from here? Well I figured that if I see no improvement then I will call again (and again) until I get answers. Let's just hope it closes up within the next few months or by 2 years old! She also agreed the problems Z had last year and his JMML "scare" was the JMML like symptoms that NS kids can have in the first year of life. She said even though that time sucked, it was good because it helped us be more proactive with him. Good point!!!
She then told me she also got results of his spine xray and lung xray and both were good! Double Yay! I forgot to ask about his CBC. We talked about his growth on the NS chart and he was in the 50th and 75th percentiles so he is doing well. He was at 20lbs so that was incredible!
We touched on Physical Therapy and she said she will refer us at anytime. However, she is not concerned and the last PT he saw wasn't concerned either. He is doing so good at pulling up. I'm sure he is the only 14 month old who's crib has not been lowered! LOL
I felt good after this appointment. I mentioned that Dr. P suggested we (Jason, JD and I) at least get an echocardiogram if we were not doing gene testing on us to rule out any heart issues. She agreed with this. We are to meet with the geneticist in about a month, after we get the gene test results back.
Progress is being made, just not at the rate I want it to be but still, things are going and that is good.
Wednesday, January 28, 2009
Tuesday, January 27, 2009
Rearview Mirror
As I was driving into work today I had the radio off in order to help me concentrate on the icky roads. I heard the boys "talking" and I looked in my rearview mirror to watch them interact. Here is what I heard:
Jonathan: No buddy we don't want you to be born again at the hospital.
Zachary: blah blah yelp
Jonathan: That's right buddy you were really sick when you were at the sick hospital but you came home all better.
I then watched Jonathan reach over and touch Zachary and he squealed and they both smiled. Jonathan remembers a lot more than I give him credit for. He remembers the hospital Zachary was in and points it out from the highway as we drive by. He remembers visiting my Dad at the heart hospital there when he was sick and watching a movie with him. He remembers what toys he played with in the hospital when Zachary was sick. He remembers Buster and my Mom and tells me how they are in heaven with God and that God and Grandma are always in his heart. He remembers Jason's Grandparents in Iowa and the toys and the stairs at their house. He keeps asking me to go back and visit. He remembers that Grandma and Grandpa F are in AL and my Dad is in FL. He amazes me. He may drive me absolutely batty some days but when I look in the rearview mirror and see him being so kind to his brother (most days he is kind to him) then I know I must be doing something right. Right?
Jonathan: No buddy we don't want you to be born again at the hospital.
Zachary: blah blah yelp
Jonathan: That's right buddy you were really sick when you were at the sick hospital but you came home all better.
I then watched Jonathan reach over and touch Zachary and he squealed and they both smiled. Jonathan remembers a lot more than I give him credit for. He remembers the hospital Zachary was in and points it out from the highway as we drive by. He remembers visiting my Dad at the heart hospital there when he was sick and watching a movie with him. He remembers what toys he played with in the hospital when Zachary was sick. He remembers Buster and my Mom and tells me how they are in heaven with God and that God and Grandma are always in his heart. He remembers Jason's Grandparents in Iowa and the toys and the stairs at their house. He keeps asking me to go back and visit. He remembers that Grandma and Grandpa F are in AL and my Dad is in FL. He amazes me. He may drive me absolutely batty some days but when I look in the rearview mirror and see him being so kind to his brother (most days he is kind to him) then I know I must be doing something right. Right?
Sunday, January 25, 2009
Call me Homer, Homer Simpson that is!
I never watch the Simpsons. But I turned the tv on channel 2 as I finished dinner dishes and cleaned up. I took the kids to their room to read them a bedtime story and when I came back into the living room around 7pm the Simpsons were on. I began picking up toys and I heard Marge yell at Bart and say, "why can't I have a son that behaves?". My ears perked up and I laughed. Then Bart and Lisa were fighting over Bart throwing boogers at her or something. They were in the car and Homer told him if he did it again he'd drive the car into a tree. So yes, Bart attempts to do it again until Marge intervenes. Wow, my son is Bart Simpson! And as much as I hate to admit it, I am Homer Simpson! I've never admitted to being the perfect mom but really, Homer Simpson? I have told Jonathan if he didn't stop screaming/yelling/throwing stuff or torturing Zachary in the car that I would drive us into a tree. Yes I am embarrassed but it got his attention. Mind you when he was about 3 months old he was screaming in the car and I ran our van into a poll at the drive thru at the pharmacy. Not intentional but still, I hit things when I get distracted. Do my threats work? OMG NO WAY!
Today the boys and I were playing on the floor in the mess of toys and Zachary had himself on his knees at the toy box. He has been doing that for a few days. Then in slow motion I watched my baby pull himself up to stand at the toy box! I screamed at Jonathan to look and we clapped and yelled! Z got over excited and fell on his bum! Then as I was getting ready to put them to bed he was saying mommy and daddy and I said, "Say Jonny" and he said "Nonny"! yay! What a great day! He is doing so well!
During the bedtime story, Zachary climbed off my lap, climbed to the TV (yes there is a tv in their room), pulled himself up and turned on the Wow Wow Wubbzy DVD. After we finished the story I put them both in bed and both boys are asleep right now in their room! For those who know our sleep issues this is HUGE and it is the third time in one week! Mind you Z still wakes up at 3am to eat something and JD wakes up at tells him to quit screaming like a baby.
Oh well, I must be doing something right b/c I think they love me.
I hear Hermie the Hermit Crab making a fuss so I need to go feed him!
Today the boys and I were playing on the floor in the mess of toys and Zachary had himself on his knees at the toy box. He has been doing that for a few days. Then in slow motion I watched my baby pull himself up to stand at the toy box! I screamed at Jonathan to look and we clapped and yelled! Z got over excited and fell on his bum! Then as I was getting ready to put them to bed he was saying mommy and daddy and I said, "Say Jonny" and he said "Nonny"! yay! What a great day! He is doing so well!
During the bedtime story, Zachary climbed off my lap, climbed to the TV (yes there is a tv in their room), pulled himself up and turned on the Wow Wow Wubbzy DVD. After we finished the story I put them both in bed and both boys are asleep right now in their room! For those who know our sleep issues this is HUGE and it is the third time in one week! Mind you Z still wakes up at 3am to eat something and JD wakes up at tells him to quit screaming like a baby.
Oh well, I must be doing something right b/c I think they love me.
I hear Hermie the Hermit Crab making a fuss so I need to go feed him!
Thursday, January 22, 2009
Waiting - Take 2
It seems that everyday I fight for getting my son the care he needs. It may be as simple as an evaluation of some sort but everyday it is phone calls, paperwork and research. I know things could be a lot worse for him but I don't want to wait and see what happens with him and see if he does "catch on". I am trying to be proactive in his health care and on days like today, I feel like I'm getting beat down.
The geneticist referred Z to Missouri's Early Intervention program (First Steps) after a 10 min conversation they decided that Z did not qualify. The wonderful state of Missouri does not recognize NS as a condition that requires this service. This service would provide us with in home physical therapy and occupational therapy. He would get assessments and it would follow him to the school district. I am just disappointed that because my son is only 4 months delayed and not 6, then the state doesn't seem to care about him. Again, I'd like to thank former Governor Matt Blunt for all the wonderful work he did while in office...notice the sarcasm?
My next step for PT is to call the insurance company and see what is covered and then return back to the place he went before. It will all work out!
I was told about a school that has therapists there on staff, Good Shepard School but at this time I can't afford daycare for Z there and then preschool and childcare for Jonathan. However, maybe when Jonathan is in school and Z is about 3 (the rates decrease a LOT at 24 months of age) then we can send him there. I know there are less expensive resources out there for us and I will find them. I refuse to let my son slip through any cracks or not be the best he can be because of a few dollar signs.
Tuesday we had his gene test done and he did SO well and he didn't even cry! I called the neurosurgeon Wednesday to find out his results...no return call yet so I guess I have to call again tomorrow. We have his hearing test scheduled for March and the nurse is scheduling his other tests and will call me back with those appointments.
On a happier note, we noticed Z kneeling again at his sing along stage toy. He was so proud of himself. He has also become a little Hoover and eats everything he sees! He is always hungry! I don't mind...well I do when it is at 3am and he wants to eat real food. Ugh!
The geneticist referred Z to Missouri's Early Intervention program (First Steps) after a 10 min conversation they decided that Z did not qualify. The wonderful state of Missouri does not recognize NS as a condition that requires this service. This service would provide us with in home physical therapy and occupational therapy. He would get assessments and it would follow him to the school district. I am just disappointed that because my son is only 4 months delayed and not 6, then the state doesn't seem to care about him. Again, I'd like to thank former Governor Matt Blunt for all the wonderful work he did while in office...notice the sarcasm?
My next step for PT is to call the insurance company and see what is covered and then return back to the place he went before. It will all work out!
I was told about a school that has therapists there on staff, Good Shepard School but at this time I can't afford daycare for Z there and then preschool and childcare for Jonathan. However, maybe when Jonathan is in school and Z is about 3 (the rates decrease a LOT at 24 months of age) then we can send him there. I know there are less expensive resources out there for us and I will find them. I refuse to let my son slip through any cracks or not be the best he can be because of a few dollar signs.
Tuesday we had his gene test done and he did SO well and he didn't even cry! I called the neurosurgeon Wednesday to find out his results...no return call yet so I guess I have to call again tomorrow. We have his hearing test scheduled for March and the nurse is scheduling his other tests and will call me back with those appointments.
On a happier note, we noticed Z kneeling again at his sing along stage toy. He was so proud of himself. He has also become a little Hoover and eats everything he sees! He is always hungry! I don't mind...well I do when it is at 3am and he wants to eat real food. Ugh!
Sunday, January 18, 2009
Let the testing begin
I am still waiting on the CT scan results from the neurosurgeon's office. It's been a week and I think I can call them next week to see if they heard anything. I know no news is good news but I hate the waiting. Mind you, this test is not related to NS, as far as I know. It is simply for his soft spot still being open.
We go on Tuesday (1/20) for his gene test. I could list what gene is being tests but um why add any more confusion to this situation. I think that this gene is also related to JMML and that is why the 2 in some cases, are linked. This test is sent off to Baylor and will take 4 weeks to get the results. Apparently only 50% of people with NS have this gene or gene mutation. Sorry but I read so much information that I can't recall what end is up anymore.
Still waiting for Early Intervention to call, the Audiology department to call and then the nurse to call with the dates of the echo, ekg and abdominal/kidney ultrasounds. We did get an eye appointment scheduled for March.
I found a blog about a little girl with NS and just read her Mom's post about her eye appointment and I could relate on SO many levels. You wait 2 hours and are even asked to arrive 10-15 min early so you can register, yet the doc sees you for all of 10 seconds! And that costs you how much? Don't get me started on that!
I have found on several reliable sites that when an infant is facing a diagnosis of JMML they should rule out NS because in that first year, NS can cause JMML-like symptoms and as I said before, it doesn't require aggressive treatment and tends to go away by one year of age. I suppose that the chemo Z got was just enough treatment to help put his little body back on track. I am so thankful his doctors went that route and were not over eager to do a BMT. This information helps me to relax about my fears of JMML "returning".
Jonathan and I watched Z pull up on lots of toys and kneel for a while at some of his toys. He also said "nana" and pointed at the bananas. He is a pointer so I now try to make him say the name of what he wants. He will tell me no if I'm wrong so I need to teach him his words so he can use them.
We go on Tuesday (1/20) for his gene test. I could list what gene is being tests but um why add any more confusion to this situation. I think that this gene is also related to JMML and that is why the 2 in some cases, are linked. This test is sent off to Baylor and will take 4 weeks to get the results. Apparently only 50% of people with NS have this gene or gene mutation. Sorry but I read so much information that I can't recall what end is up anymore.
Still waiting for Early Intervention to call, the Audiology department to call and then the nurse to call with the dates of the echo, ekg and abdominal/kidney ultrasounds. We did get an eye appointment scheduled for March.
I found a blog about a little girl with NS and just read her Mom's post about her eye appointment and I could relate on SO many levels. You wait 2 hours and are even asked to arrive 10-15 min early so you can register, yet the doc sees you for all of 10 seconds! And that costs you how much? Don't get me started on that!
I have found on several reliable sites that when an infant is facing a diagnosis of JMML they should rule out NS because in that first year, NS can cause JMML-like symptoms and as I said before, it doesn't require aggressive treatment and tends to go away by one year of age. I suppose that the chemo Z got was just enough treatment to help put his little body back on track. I am so thankful his doctors went that route and were not over eager to do a BMT. This information helps me to relax about my fears of JMML "returning".
Jonathan and I watched Z pull up on lots of toys and kneel for a while at some of his toys. He also said "nana" and pointed at the bananas. He is a pointer so I now try to make him say the name of what he wants. He will tell me no if I'm wrong so I need to teach him his words so he can use them.
Tuesday, January 13, 2009
We have a diagnosis
This morning was a bit rough. Zachary and I were at the hospital at 8am for his CT scan. He was such a trooper! He did so good and made lots of friends. He impressed everyone with how still he was. We then headed over to the Geneticist appointment.
A stomach bug had hit our house on Friday starting with Zachary, then Jonathan, me and now Jason. None of us are 100% but to see Zachary smiling again and Jonathan not sitting still is a good sign. I was afraid Z would start puking at his appointment. We first met with the Genetics Counselor and reviewed some family history and why I suspected Noonan Syndrome. As soon as the doctor walked in she began showing me pictures of kids with NS and confirmed the characteristics that I felt Z had...droopy eyelids, low set ears, blue eyes and then she added in several more which I hadn't heard of. She asked what prompted me to think he had NS and I told her about the link to JMML and how a friend pointed out his facial features to me ( her sister has NS). She confirmed what I suspected...Zachary has NS.
Obviously he did not meet all the characteristics but he had so many of them. She took lots of measurements and our little Z sat very patiently and smiled at her. He reached for a picture of her daughter that she wore on her badge and tried to kiss it. He is such a lovey.
My friend showed me this:
What is the association between JMML and Noonan syndrome?In rare cases, infants with Noonan Syndrome develop a JMML-like disorder. Noonan syndrome is characterized by distinct facial features, growth retardation, and heart anomalies. Notably, the JMML-like disorder in patients with Noonan syndrome often resolves without aggressive treatment by the time the child turns one year of age.
Could this seriously be the cause of everything my guy went through last year? Wow!
So where do we go from here? Well as I sat in the office taking it all in, calming Z and trying to think of questions and just wrap my head around all this she rattled off some stuff about genetics testing and ultrasounds. We were sent down for a blood count, coagulation test, spine xray and lung xray. She agreed with me that his spine is for sure bowing out and she wants it looked at. We will then get an echocardiogram, ekg, abdominal ultrasound and kidney ultrasound. She was concerned at how his belly was "puffy". He will also see an eye doctor, have a hearing test and be referred to Early Intervention for physical and occupational therapy. Once she gets all his test results, we will meet with her again. She was wonderful. See why my head was spinning? Thank goodness the nurse wrote it all down for me.
We went to have his xray's done and would you believe this kid was still for the techs? I am so amazed! They were very impressed too! And when he had his blood drawn he sat on my lap and didn't flinch! He cried b/c he didn't like his arm being held down and I'm sure it did sting a bit.
The Dr. recharted him on an NS chart and he was in the 75% for weight and head circumfrence and I think 80% for weight. He will now be charted on an NS chart and at least he makes it on the chart there! On a "normal" chart he is like 5% for weight and head. Poor buddy. So this explains why my Peanut is just that...a Peanut!
Its a lot for me to take in but I feel good about this. I know he is going to get excellent care and NS is so much better than JMML!!! He doesn't seem to have the heart condition that goes with NS so I am optimistic about this. I'm still a bit sad that my baby has a "syndrome" of any type. No one wants their child to have to live with any chronic condition but I'm sure as I get use to it, it will just become part of our life and we will do what we have to do for Z.
A stomach bug had hit our house on Friday starting with Zachary, then Jonathan, me and now Jason. None of us are 100% but to see Zachary smiling again and Jonathan not sitting still is a good sign. I was afraid Z would start puking at his appointment. We first met with the Genetics Counselor and reviewed some family history and why I suspected Noonan Syndrome. As soon as the doctor walked in she began showing me pictures of kids with NS and confirmed the characteristics that I felt Z had...droopy eyelids, low set ears, blue eyes and then she added in several more which I hadn't heard of. She asked what prompted me to think he had NS and I told her about the link to JMML and how a friend pointed out his facial features to me ( her sister has NS). She confirmed what I suspected...Zachary has NS.
Obviously he did not meet all the characteristics but he had so many of them. She took lots of measurements and our little Z sat very patiently and smiled at her. He reached for a picture of her daughter that she wore on her badge and tried to kiss it. He is such a lovey.
My friend showed me this:
What is the association between JMML and Noonan syndrome?In rare cases, infants with Noonan Syndrome develop a JMML-like disorder. Noonan syndrome is characterized by distinct facial features, growth retardation, and heart anomalies. Notably, the JMML-like disorder in patients with Noonan syndrome often resolves without aggressive treatment by the time the child turns one year of age.
Could this seriously be the cause of everything my guy went through last year? Wow!
So where do we go from here? Well as I sat in the office taking it all in, calming Z and trying to think of questions and just wrap my head around all this she rattled off some stuff about genetics testing and ultrasounds. We were sent down for a blood count, coagulation test, spine xray and lung xray. She agreed with me that his spine is for sure bowing out and she wants it looked at. We will then get an echocardiogram, ekg, abdominal ultrasound and kidney ultrasound. She was concerned at how his belly was "puffy". He will also see an eye doctor, have a hearing test and be referred to Early Intervention for physical and occupational therapy. Once she gets all his test results, we will meet with her again. She was wonderful. See why my head was spinning? Thank goodness the nurse wrote it all down for me.
We went to have his xray's done and would you believe this kid was still for the techs? I am so amazed! They were very impressed too! And when he had his blood drawn he sat on my lap and didn't flinch! He cried b/c he didn't like his arm being held down and I'm sure it did sting a bit.
The Dr. recharted him on an NS chart and he was in the 75% for weight and head circumfrence and I think 80% for weight. He will now be charted on an NS chart and at least he makes it on the chart there! On a "normal" chart he is like 5% for weight and head. Poor buddy. So this explains why my Peanut is just that...a Peanut!
Its a lot for me to take in but I feel good about this. I know he is going to get excellent care and NS is so much better than JMML!!! He doesn't seem to have the heart condition that goes with NS so I am optimistic about this. I'm still a bit sad that my baby has a "syndrome" of any type. No one wants their child to have to live with any chronic condition but I'm sure as I get use to it, it will just become part of our life and we will do what we have to do for Z.
Tuesday, January 6, 2009
Welcome 2009
Happy New Year!
I am hoping 2009 is a much happier year than 2007 and 2008 were. Obviously each of those years had some good times but they were both really hard years.
I am optimistic but if I could get my kids healthy and let them STAY healthy I'd feel much more optimistic.
Zachary has been on 3 rounds of antibiotics since October 1st. He had the croup, ear infections, bronchitis and a virus. On the 26th I took him to the doc suspecting yet another ear infection...nope all was clear so that was good. Yet 2 days later his cough comes back a bit stronger. New Years Day I notice green stuff oozing from his eyes...not good. I take him in on the 2nd and we see a new doc in the office, Dr. Rachel. She is very nice and i told her how he has been sick since Oct with the exception of a week or 2. She told me she wanted to try and knock this out and gave him a stronger antibiotic because this time he had bronchitis (3rd time in his short little life), double ear infection (lost count of how many) and conjunctvitis of the eye. It is similar to pink eye, yet it is not pink eye. My friend calls it eyebola! I'm going to steal that from her!
So while Z's eyes got better and I can tell the bronchitis moved out of his chest, Jonathan starts oozing green goo from his eyes! GREAT! Eyebola has invaded the Foster's! So back we go to see Dr. Kate. She says, "Oh that is the worst case I have ever seen. Poor baby. But don't touch me!". ha ha and I heard her tell the nurse to spray down the room with Lysol. I expect I will come down with eyebola next week and have yet another visit w/Dr. Kate. I told her that and requested my own parking space and spot in the waiting room. They are expanding the office and I am sure my frequent visits over the past year have helped pay for it so she said she would have "Foster Family Couch" for us.
After our visit with Dr. Kate and run to the Pharmacy we headed down to the children's hospital for Z's appt. with the neurosurgeon. It took about 2 hours for seriously, 10 min w/the doctor. GGGRRRR! And I bet it cost me half my deductible too! Hmmm, what is the life time out of pocket maximum??? LOL However, he said it should have closed by 12 months but can take 24 months but his is a bit large for his age and it is getting hard but they want to do a CT scan. Since he never had one done before this one is more or less just to have something to base any changes on. If there is a problem, they will call me to come in and if not, we will just watch it and see what happens in the next few months. They are going to call me to schedule the CT scan in the next few days.
Next week, we meet with the geneticist. I will update after that.
We do have something to celebrate...Zachary can now pull himself up on to the couch. I don't trust him to stand too long alone but he can hold on to that couch and beam with pride!
I am hoping 2009 is a much happier year than 2007 and 2008 were. Obviously each of those years had some good times but they were both really hard years.
I am optimistic but if I could get my kids healthy and let them STAY healthy I'd feel much more optimistic.
Zachary has been on 3 rounds of antibiotics since October 1st. He had the croup, ear infections, bronchitis and a virus. On the 26th I took him to the doc suspecting yet another ear infection...nope all was clear so that was good. Yet 2 days later his cough comes back a bit stronger. New Years Day I notice green stuff oozing from his eyes...not good. I take him in on the 2nd and we see a new doc in the office, Dr. Rachel. She is very nice and i told her how he has been sick since Oct with the exception of a week or 2. She told me she wanted to try and knock this out and gave him a stronger antibiotic because this time he had bronchitis (3rd time in his short little life), double ear infection (lost count of how many) and conjunctvitis of the eye. It is similar to pink eye, yet it is not pink eye. My friend calls it eyebola! I'm going to steal that from her!
So while Z's eyes got better and I can tell the bronchitis moved out of his chest, Jonathan starts oozing green goo from his eyes! GREAT! Eyebola has invaded the Foster's! So back we go to see Dr. Kate. She says, "Oh that is the worst case I have ever seen. Poor baby. But don't touch me!". ha ha and I heard her tell the nurse to spray down the room with Lysol. I expect I will come down with eyebola next week and have yet another visit w/Dr. Kate. I told her that and requested my own parking space and spot in the waiting room. They are expanding the office and I am sure my frequent visits over the past year have helped pay for it so she said she would have "Foster Family Couch" for us.
After our visit with Dr. Kate and run to the Pharmacy we headed down to the children's hospital for Z's appt. with the neurosurgeon. It took about 2 hours for seriously, 10 min w/the doctor. GGGRRRR! And I bet it cost me half my deductible too! Hmmm, what is the life time out of pocket maximum??? LOL However, he said it should have closed by 12 months but can take 24 months but his is a bit large for his age and it is getting hard but they want to do a CT scan. Since he never had one done before this one is more or less just to have something to base any changes on. If there is a problem, they will call me to come in and if not, we will just watch it and see what happens in the next few months. They are going to call me to schedule the CT scan in the next few days.
Next week, we meet with the geneticist. I will update after that.
We do have something to celebrate...Zachary can now pull himself up on to the couch. I don't trust him to stand too long alone but he can hold on to that couch and beam with pride!
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