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Wednesday, December 28, 2011 7:39 PM CST
Hi Everyone!
Merry Christmas and Happy New Year!
This has been a very good year for Zack. The biggest news is that he has been discharged from Oncology. He is in complete remission and cured from JMML!! His other specialists are very pleased with his progress. At this point, he only sees his specialists once a year except for GI which is every 6 months. They are only follow-ups, no new problems. At the Endocrinology appointment, they did a bone age and the results were 4 years 3 months, so he is still on the very small side for an 8 year old, but will continue to grow slowly up to and beyond age 18. His heart is in great condition, his glasses prescription is not as strong, his hearing in his right ear is still perfect, no cavities all year – plus he finally lost those two bottom teeth in October! For Gastroenterology, it is still 6 month follow-ups, but his labs are all normal. Weight gain is still an issue for Zack. He seems to be stuck at 32 pounds…has been stuck for over a year now. We go back to GI in a few days, so we’ll see what the doctor says about that.
Extra-curricular activities this year have really increased for both Ethan and Zack. They are both in Cub Scouts – Zack is a Wolf and Ethan is a Webelos II. Ethan will cross over to Boy Scouts in February. Karate is going well, both boys are blue belts testing for their green belts. They love karate. When vacation is over, Zack will be adding a lesson with nunchucks and Ethan will be learning the Sais! Weaponry makes me nervous, but they really want to learn. Swimming lessons are still in full swing on Saturdays. Ethan did Lego Robotics again this year and loved every minute of it. This year they went to two competitions and placed 12th and 13th, so it was a very good year! We have two musically inclined children now…Ethan is still taking piano lessons and Zack just started violin lessons.
Fifth grade for Ethan has really made him knuckle down and work. Lots of homework, reports, and tests. Second grade is great! Zack’s teacher is great and he is really growing educationally and socially. Their first report cards for this school year were excellent. I am so proud of how well they are doing!
This past summer, Ethan and Zack both went to Camp Trinity for 6 weeks. Swimming started out a bit rough for Zack but he was able to move up and swim well. Ethan tested up to the 10 foot part of the pool! The boys took a two week break from Camp Trinity to do Karate Camp…they had so much fun.
We had our first week long family vacation this past summer. We rented a house in Ocean City, New Jersey. The theme was RELAX, RELAX, RELAX! And we sure did do just that. There was an earthquake on Wednesday, then on Thursday the hurricane started and cut our vacation short by two days as we were evacuated. That just happened to be Zack’s birthday, so we brought his celebration home and continued it through Friday. Even though we ran into some rough weather, we still had a GREAT time!
Wishing you all a very Merry Christmas and a wonderful 2012!
Love,
Beth, Nathan, Ethan, and Zachary
Sunday, December 19, 2010 8:59 PM CST
Hi Everyone!
Merry Christmas and Happy New Year!!
Zachary has been doing very well medically. All follow-ups over the summer went really well. The Cardiologist said that his heart is good, no problems. Zack had a change in his eyeglass prescription…a little weaker this year! Hearing is still the same, no change, which is exactly what we want to hear. Recently in school, Zack has been using a new hearing system, works much better than his old FM system. The geneticist had nothing new to say this year, again, this is good news:) The ENT commented again on Zack’s large tonsils, but he said they are not as large as when he was a toddler, so he is just going to let him grow into them. We are approaching the six month GI appointment (Dec. 27th), Zack has been a very picky eater since school started and hasn’t been finishing his lunch, so I’m not counting on any weight gain this time. GI doc will not be pleased. After the GI doc on the 27th, Zack is doctor free until July when we go back for his Oncology follow-up.
Summer swimming lessons went great! Zack can swim:) He started taking lessons at the YMCA in September. I think going down the slide is his favorite part of each lesson!!
Both Ethan and Zack had a great start to the school year. Great teachers and good classmates. Zack is in first grade and Ethan is in fourth grade. Zack has a physical therapist that comes into his school once every other week and he goes to speech therapy once a week…yes, we finally got speech therapy for him!! Yay!! I have to take him across the street from his school to the public school for occupational therapy once a week and for hearing support once a month. He is doing really well in all therapies. Zack’s biggest hurdle is endurance with writing. He fatigues quickly. With more focused classes at school and more homework each night, his little hand bothers him frequently.
In the beginning of October, the boys started going to karate again. We are going to a different karate place this time. They had to start over with the white belts, but just this past week, they earned their yellow belts. They love karate!
Ethan earned his bear badge in Cub Scouts and is now in Webelos I. Zack has now joined Tiger Cub Scouts and is enjoying every minute of it! He is all proud of his scout shirt and the beads he is earning.
Nice quiet medical year for Zack:) Hope 2011 will be just as quiet!
Wishing you and your family a Very Merry Christmas and all the best in 2011!
Love to you all,
Nathan, Beth, Ethan & Zachary
Tuesday, July 6, 2010 12:24 AM CDT
MILESTONE!!
Hi Everyone:)
Zack just had his Oncology visit today. Everything went very well. His blood work is all normal! The doctor is pleased with how well he is and has been. She put our minds at ease that his JMML is in remission. Zack is cancer free and is a cancer survivor!! Now for the big milestone: The doctor said that she does not need to see Zack for a whole year! This is a first for him...six months was great, but a year is so much better!! She did say that if we are nervous about waiting the year we can request a blood draw at six months just to check levels, but she feels confident that there will not be a change:)
Last Monday, Zack saw his GI doctor. He didn't gain much weight in six months but he did grow 2 inches! This being said, the doc wants him to begin taking DuoCal three times a day to try to increase calories for better weight gain. His BMI is just above 25%, so he is actually on a chart! Yay:)
This summer is full of follow-up appointments for Cardiology, Genetics, ENT, Audiology, and Ophthalmology. These are all annual appointments, so we get them out of the way before school starts.
Zack is still mad at his dentist. She told him last summer that his bottom two teeth were getting ready to fall out. Well, they are still there, one is sort of loose, but not ready to fall out yet. He cannot wait for his teeth to fall out and even more, he cannot wait for his top two teeth to grow in...it's been a little over 2 years since they've been pulled! He is a great brusher though, cause he hasn't had a cavity for over 2 years!! YaHoo!
Daily swimming lessons are keeping Zack occupied this summer. He is in group lesson and he loves it! Face in the water and even jumping in! I see a good swimmer by the end of the summer. Ethan is back to Camp Trinity this summer. He loves it. The first week he caught 3 fish! He has been trying for 2 years to catch a fish, he was so excited he was tripping on all his words trying to tell me when he got home that day! HaHa!!
Both boys had a great school year! Ethan received a certificate for Perfect Attendance, Zack should have too, but he was 2 hours late one day because of a doctor appointment:( Somehow they escaped the winter without any illnesses! Ethan made his First Holy Communion in April. He looked so handsome in his white suit. Ethan's and Zack's report card was great and now in September I will have a 4th grader and a 1st grader...where did the time go?!?!
Nathan is well and has been very busy with work. He has had to travel quite a bit in the past 6 months. I've been fine, had another bout with a kidney stone recently...hopefully that was the last!
Some sad news, Chancellor (our handsome white Persian cat) died in May. The vet thinks it was his heart, he was diagnosed with a heart murmur in April. He died peacefully in his sleep at home.
Some good news, we will be picking up an adorable frisky little seal point Ragdoll kitten from the breeder on Friday! The boys are so excited! Ok...I'm more excited than they are! LOL:)
Hope everyone is staying cool during this heat wave! Enjoy your summer and I will update as the other appointments get closer!
All our love,
Beth, Nathan, Ethan and Zachary
Tuesday, December 22, 2009 6:10 PM CST
Hello everyone!
This has been a great year for our family, hope it has been the same for yours. Zack had a great year medically. He has only had a handful of appointments and they were all just follow-ups.
Zack did have his Hematology appointment in August, but with a new doctor who was not familiar with his history and not familiar with JMML, so we are headed back to Oncology clinic to see the top JMML doctor at CHOP. His most recent labs were great! All levels are normal.
Zack has an appointment to see the GI doctor the week after Christmas, hopefully he will discharge him, we will see, fingers crossed.
Baseball registration actually starts next month, both Ethan and Zack are going to play in the spring. Zack hopes to have some Rockies t-ball players from last years team on his team again this year. Ethan will be playing in the Pony league. They are very excited. It has been so different not having to go to karate classes, but baseball has taken over!
Ethan joined the choir at church this year. He will be singing at the Christmas Eve mass. We are so proud of him for singing in front of so many people and he has a wonderful voice. No better use than to praise God!
We wish you and your family a very Merry Christmas and a Happy New Year!
Love to you all,
Beth, Nathan, Ethan and Zack
Wednesday, January 21, 2009 9:14 PM CST
Hi,
Zack had his Endocrinologist appointment today. He grew 3/4 of an inch and gained 2 pounds since July. The results of Friday's tests came in. His cortisol levels are perfect. As for the growth hormone...the cutoff for growth hormone deficiency is 8 and Zack tested at an 8.1, so the doctor said that she would not consider him to be growth hormone deficient, but he is borderline. She walked us through the growth hormone shot and IGF-1 shot procedures. Nathan and I decided that growth hormone shots are not for Zack based on his history of JMML. The doctor said that she goes along with our decision. She wants to see Zack again in 2 years to check on his growth and give us an updated adult height prediction. At this point, based on his current growth curve, the prediction is that Zack is not going to be the average Noonans 5 foot, 5 inches...he will be shorter.
The next CHOP appointment is with Hematology/Oncology in mid-February. Labs for GI will also be drawn at that time. This should be the last draw to check on the elevated liver enzymes as the GI doc feels that the problem has been resolved.
On a different note...Ethan has passed his red belt test in karate!!! He has been testing since October. He is so excited. Belt ceremony is Monday night after Core class. I will post pictures. We are very proud of him for working so hard and not giving up. There is only one belt color between red and black! His goal is to become a Sensei.
I will post again soon.
Love,
Beth, Nathan, Ethan and Zack
Friday, January 16, 2009 4:24 PM CST
Update #2
Hello,
Well, the tests are finished and we are now home.
The first test went smooth...Zack slept through it nicely. This test was the Clonidine Stimulation test. Clonidine is a medicine that causes the pituitary gland to secrete growth hormone.
The next set of tests he had were CRH Stimulation and Arginine Stimulation. CRH (corticotropin-releasing hormone) is a naturally-occurring hormone which causes the pituitary gland to secrete the hormone ACTH. ACTH tells the outer part of the adrenal gland to produce hormones such as cortisol. The way a patient's cortisol levels respond to the test can tell a doctor if the problem is with the pituitary glands, the hypothalamus, or the adrenal glands. The Arginine test measures the ability of the pituitary gland to release GH.
Zack slept about half way through the second test. He was not a happy camper when he woke up and found out that he was not allowed to eat or drink until the test was completed. That was a really long 45 minutes for everyone.
They drew blood about 10 times over the 3 1/2 hours.
There are no long term side effects from any of these medications. Zack did have immediate side effects of a mild reduction in blood pressure, flushed cheeks, and mild sedation. By the time we left the hospital, his blood pressure was normal, he was wide awake, and his cheeks were back to normal color.
We ordered Zack lunch and he was so happy when the nurse brought it in and said he was allowed to eat and drink. CHOP really has a great menu for the kids to choose from. It was almost too hard for him to choose:)
Ethan was wonderful! He was so good and patient. He watched movies, played his DS, and ate lunch when Zack was asleep. We are very proud of how well behaved he was and how grown up he acted...he stayed in the room when the nurse put in Zack's IV.
Now we wait for the results. We are scheduled to see the endocrinologist next Wednesday, but since the results will take a few weeks, we may reschedule. As soon as I know any results I will post again.
Thanks for all the prayers and emails:)
Our love to you all,
Beth, Nathan, Ethan, and Zack
Friday, January 16, 2009 10:23 AM CST
Hi,
We are at CHOP. I'm sitting in a nice big comfy chair typing with one hand because Zack is stretched out ontop of me snoring away...loudly:) They had to try the IV twice, but finally got it. Zack was very brave. We are about 1 hour into the first test. This test should last about 2 hours. Tests 2 & 3 will be combined into one which should last an hour and a half. Hopefully he will continue to sleep. Before he fell asleep he was begging for food and drink, but he must be fasting for these tests, so the longer the meds keep him asleep the better.
Ethan is camped out in the other chair watching The Spy Kids movie. He got a day off today since we had to be at CHOP before school opened.
The nurse just came in to draw blood and check his pressure. She told me that the test results could take up to 3-4 weeks. His blood pressure is low, but ok.
I will update as the day goes on.
Love,
Beth
Wednesday, January 7, 2009 12:54 AM CST
Hi Everyone,
Happy New Year! Hope the year is starting off well for everyone.
Zack's cardiologist contacted us about the MRI results and everything looks normal. This is great news as heart problems are a big issue with Noonan Syndrome. We also heard from the endocrinologist who said pituitary looks normal. Yeah again! Now for the third YEAH, Zack's bloodwork came back normal after the JMML scare in October, so he did just have a cold/infection.
The only other appointments that Zack had since the MRI was with GI and Audiology. GI went well...he moved Zack out to 6 month follow-ups now and mainly just to keep a check on the constipation issues which are really well controlled now. He is going to check the liver enzymes one last time in February. There have been no changes in his hearing since the last test.
Zack has a big test coming up next Friday, the 16th. He will be admitted to CHOP's Seashore House day medicine unit for the growth hormone provocative study and ACTH (Adrenocortitropic Hormone) tests. These tests will probably take about 4 hours. He will be given an IV and they will administer Argenine and Clonodine for the GHPS and Cortisol for the ACTH and they will draw blood every 20-30 minutes. Supposedly the Cortisol will make him tired and hopefully sleep through most of it. The doctor assured us that the tests are safe and the meds will not affect his JMML status or have lasting effects. However, we've heard this before and things didn't go as planned, so please keep Zack in your prayers.
I will keep you posted on how the test goes next week.
We are finally up on facebook, so look us up under Beth Jennings Smith.
Love,
Nathan, Beth, Ethan, and Zack
Saturday, October 25, 2008 6:04 PM CDT
Update #4
Hello,
Can you believe all this rain on the night The Phillies are supposed to play?!
Zack's only complaint today is that he is tired of having a cough. His throat is no longer sore and his voice is much stronger.
As I mentioned in the last update, we were able to cancel todays appointment if Zack was doing better, which he is, so no appointment:) The oncologist finally called back. She said that she is not worried about his counts. She contacted the cardiology department who did the MRI and she said based on what they told her about the problems he had with the contrast dye and while under anesthesia, she feels strongly that he just has an infection. We will wait until Friday to do the bloodwork as she feels that waiting 7-10 days would allow the antibiotics to work and give us a better picture. If it is an infection, his white count should go down by Friday, if it is the JMML it will only go up higher, but she doubts this is the case. Yes, I know, Halloween is Friday and yes I am making him get bloodwork done on Halloween. I know, I know, mean, mean Mommy:) Zack's class party is one hour long so we will go to CHOP after the party and be home in plenty of time to have dinner and go trick-or-treating.
Speaking of trick-or-treating...Ethan is going as Indiana Jones and Zack is going as Darth Vader. They are both really excited. They both have sealants on their teeth, so wait until they find out that any sticky, chewy candy that they get, they cannot eat it:( Guess mom and dad will gain a few extra pounds this year.
Hopefully we should have results of the MRI from the cardiologist or the endocrinologist on Monday or Tuesday. I will update again when I find out.
Our love to you all,
Beth, Nathan, Ethan, and Zack
Thursday, October 23, 2008 10:01 PM CDT
Hi,
Hope everyone is having a good evening. Zack's appointment today went well. The doctor said that his lungs are still clear, he has not had a fever since he came out of the anesthesia, and he is acting like himself. His throat is still sore and his voice is still a little raspy, but it is not affecting his appetite or his willingness to talk:)
The pediatrician said that we can cancel Saturday's appointment as long as he only gets better and not worse, but he needs to go back to CHOP on Monday morning for labwork. The pediatrician's office has a lab technician, but Zack is a hard stick and they have not had luck in the past with getting a vein, so off to CHOP we go. CHOP is also better at dealing with children who are afraid of needles. The older Zack gets, the more aware he is of where we are going and why we are going there and he does fight it.
The oncologist has not returned our phone call yet, but now I'm hoping that she does not call until after his bloodwork on Monday. That way she can compare the two results. We will have our fingers crossed that his white cell and monocyte counts are much lower than they were yesterday.
Zack is allowed to go back to school tomorrow, so he is happy. Ethan is happy too...he cannot stand the fact that Zack didn't go to school for two days:)
Well, I'm the only one still awake in this house as my brain is still running wild from the excitement of the last two days, but it's off to bed for me now too. I will update again as I hear from any of the doctors.
Love,
Beth & Nathan
Wednesday, October 22, 2008 4:45 PM CDT
Update #2
Hi Everyone,
We are finally home. This has been a pretty rough day. The anesthesia team was able to put Zack under the anesthesia and intibate him without any problems, however, the longer he was under, the more they had to suction his lungs. He had a cold last week, which they knew about and examined him, and decided the anesthesia would be safe. Big red flag when they put in the contrast dye for the MRI though. Zack's right lung "lit up" making them question infection of some sort. They ran labs and his white cell count was pretty high and they did an x-ray of his lungs which was clear, didn't show any problems like the MRI did.
We were instructed to take him to the pediatrician straight from the hospital which we did. Well, she is questioning strep pneumonia even though his lungs sound clear and his cold symptoms are much better than they were last week. She also saw todays lab results. Lets just say that she scared us enough to call Zack's oncologist to see if we are dealing with JMML symptoms or just an infection. Hopefully the oncologist will call back tonight, if not, I don't see either Nate or myself getting much sleep tonight. We will be following up with a pediatrician appointment tomorrow morning.
Zack is doing fine, his throat is sore from the tube and he is tired. He was not too happy with us for taking him to see the pediatrician and was even more furious with the pediatrician for poking at him and then prescribing antibiotics.
Please keep Zack in your prayers and that the oncologist has good news to tell us. Your posts and emails really make Zack happy...Thanks:) I will update again after I hear from the Oncologist and after his appointment tomorrow.
Oh, the results of the MRI of the heart and pituitary can take up to 72 hours, so I assume we will not hear anything until early next week.
Love,
Beth and Nathan
Wednesday, October 22, 2008 7:40 AM CDT
Hi Everyone,
Hope you are all doing well. We are all fine. Right now we are sitting in CHOP's Cardiology Reception room waiting for Zack to finish his MRI. Zack's cardiologist and endocrinologist reqested that he have MRI's of his heart and pituitary. They are checking his heart just because of the Noonans diagnosis and his pituitary because of his short stature. The endocrinologist is concerned about Zack's growth patterns. She is considering growth hormone treatment for him, however, Nathan and I are against this due to his JMML diagnosis. She is aware of our concerns, but she wants a clear picture of why his growth is so slow.
We arrived at CHOP at 5:30am and they took him back to start the anesthesia at 7am. The MRI should take about 2 hours and then they will keep him for for at least another two hours in the recovery room to monitor him.
I will update again once we get home and settled.
Love,
Beth & Nathan
Friday, April 25, 2008 9:18 AM CDT
What a beautiful day today is:)
Last night around 8pm Zack's spark came back and he ate some spaghetti and started talking and asking questions about why he couldn't get the spaghetti off the fork - no front teeth:) Then it became a game where he would push each strand of it through the open space. He found it very amusing:) By 11pm he was walking (very wobbly), playing webkinz computer games, and making tents out of pillows and blankets for a hideout for him and his webkinz.
Zack is doing very well today! He slept through the night with no problems. He still has a cough from the breathing tube and his throat is still a bit irritated. The toothfairy visited last night and Zack awoke to find a very nice $$ gift from her. Seems that the toothfairy gives an extra special amount for surgically extracted baby teeth! Zack has decided to buy another webkinz with it. I think we need to invest in another house for all these webkinz:)
This morning I finally got a chance to look into his mouth. I couldn't figure out which teeth were filled, so I assume they used white filling instead of silver (which is good because that means that they were not as bad or deep) or they were all on the top molars which I couldn't see. He looks and sounds adorable without front teeth! The doctor told us again yesterday that his permanent teeth will be very delayed coming in, so we expect around 8-9 years old before we see them. We have a follow-up appointment in 3 weeks with the dentist.
Nate and I have a few more gray hairs but our stress levels and blood pressure have returned to normal (if that is even possible when you have children..ha,ha).
Thanks again for all your prayers! Zack loved everyones posts and cards:) You all made him feel very special.
Beth, Nate, Ethan & Zack
Thursday, April 24, 2008 1:47 PM CDT
I am sorry for the update delay. There was not an available computer before they called us back to the recovery room.
Zack is well and we are now home. The surgery went very well. The front two teeth have been extracted, he had four molar fillings and one front tooth filling. They did not have to silver cap his molars! They only sealed them:)
The exam and x-rays were completed by 9:30 and then at 10:30 the nurse came out and said he was done and they were bringing him out of the anesthesia. By 11am we were sitting in the recovery room with him. He did so well under anesthesia, but he had a rough intibation and they really irritated his throat, so he has a really bad cough and his throat is extremely sore. He has not complained of mouth pain yet.
He slept the entire way home and he is very groggy. He asked for juice as soon as we got home.
Zack is being such a big brave boy, we are so proud of him.
The rest of today should be pretty quiet and I expect him to sleep alot. I will update again as he gets moving.
Thank you all for your prayers, well wishes, and messages.
Our love to you all,
Beth & Nathan
Thursday, April 24, 2008 7:43 AM CDT
Good Morning!
We are here in the Surgery Waiting Area. They took Zack back to the OR at 8:30. The trip to CHOP was uneventful...Zack slept half way. There was not much traffic either, so we arrived quite early. This worked to our advantage as they took us back to the pre-op room by 7:05. We had time to watch Spongebob and Caillou before they gave him a dose of Verset. He went willingly with the nurse giggling all the way to the operating room.
The nurse will come out and update us on an hourly basis throughout the surgery. As we get info I will update this site.
Last night Zack requested notes on his webpage so he can hear them when we get home.
Keep those prayers coming:)
Beth & Nate
Wednesday, April 23, 2008 9:28 PM CDT
Hi everyone,
Well, our arrival time at CHOP is set for 7:15am. I assume surgery is at 9 or 10am. The plan is that they will do x-rays, a cleaning, a fluoride treatment, and full exam. From there they will decide whether fillings are needed and which teeth will be pulled.
Zack is snacking again right now as he is not allowed to eat past 11pm. He can still drink until 5am. Hopefully, since we have to leave so early in the morning, he will sleep on the ride there and not start asking for food or drink.
CHOP is very good with updating parents in the waiting area, so I will update the site as often as I can (depending upon computer availability) to keep you all informed on his progress.
Keep the prayers coming:)
Love to you all,
Beth, Nate, Ethan & Zack
Tuesday, April 8, 2008 7:27 PM CDT
Hi!
Wow, it has been a long winter! I am so ready for springtime. Weather has been very nice, but illnesses have been bad. We all battled colds, but Zack got the worst of it as he had two bad colds with a three week break between them each time accompanied by an ear infection.
I started the New Year with surgery on January 22nd. The surgery was a success, but recovery was rough with two trips to the ER and an overnight stay at Mercy Suburban Hospital. Nathan stayed with me while my Mom and his Mom cared for the boys – who enjoyed every minute of the constant attention and spoiling:)
Zachary’s doctor appointments have been going well. The annual Genetics appointment went smooth and we were told we can move this appointment to every other year. YEAH! Hematology/Oncology also went well with another appointment change to annual visits with a 6 month bloodwork between visits. Again a big YEAH! Only a year and a half countdown left until discharge:) Keep your fingers crossed and the prayers coming.
Now for the big appointment – Zack will be going to CHOP for dental surgery on April 24th. He will need to have silver caps put on all 8 molars and they will probably be pulling the front top two teeth. We went to the Pre-Op visit on Monday and they did a great job of making me more nervous than I was prior to the visit! They went into more detail about the surgery and anesthesia than I wanted to hear. Our main worry after surgery is eating. With silver caps and missing teeth, I hope this doesn’t have a negative impact. Zack doesn’t eat much as it is and he is a picky eater.
The day of surgery, I will try to update as often as I can. Please say some prayers for Zack.
Love,
Beth, Nathan, Ethan & Zack
Thursday, December 13, 2007 6:39 PM CST
Happy Holidays!
Hope this holiday season finds everyone happy and healthy.
The boys are doing well in school. Ethan’s teacher this year is very nice. He has all new friends this year as only three other children from last year’s kindergarten class are in his class this year. He misses his buddies from last year, but he still gets to see them on the playground at lunchtime. Ethan just got his report card last week and it was outstanding! Nathan and I met with his teacher and she thinks Ethan is doing super work and is a wonderful, well rounded child with a great sense of humor. Zack is also doing great this year. I really think that he is doing better with the five day schedule compared to the three day because he knows where he is going every day…there are no questions of “is today a school day?”. Zack can print his name neatly and is showing great imagination in his drawings. His interim report from school has him at "age appropriate" in almost all categories. PT and OT will help improve the "needs work" categories. He has been staying for aftercare a couple days each week while I pick Ethan up from school and for him the highlight of it is snack time.
Speaking of snack time, Zack has really improved his list of tolerated foods. Textures are still an issue, but he now loves to eat chicken, turkey and pork. Red meat is still “YUCKY” to him and veggies are not far behind, but he is making progress and is now willing to at least try everything. His favorite food right now is Popcorn. He would eat popcorn all day every day if we would let him.
Zack had his follow-up appointment with the Urologist and he said that the surgery was a success and Zack looks wonderful. He is very happy with the way the incisions have healed and doesn’t need to see Zack again until September.
We saw GI in November and Dr. Flick was very happy with Zack’s progress. He still does not want to rule out Hirschsprungs Disease completely (even though the biopsy was pretty clear that he doesn’t have it), but he does not want to do any further testing as the medication he is on is working nicely. Zack gained a little over one pound and grew 1/3 of an inch since his last GI appointment in April – very good indeed!
Just this past Tuesday, Zack had his 6 month Audiology appointment. There is still no hearing in the left ear. She is not expecting there to be any, but she checks anyway. His right ear has normal hearing. Starting this month, Zack has a new IU therapist working with him at Hobbit House. It is a Hearing Therapist. He was evaluated in November and the therapist feels that he could profit with therapy one hour once a month. She feels that Zack is doing a lot of lip reading, which is good and bad. It is good because he has taught himself a way to “hear” everything. Bad part is that he is relying on it to get all information. If his teacher turns away to write on the board and talks at the same time, if Zack is too far away from her, he only hears part of what she is saying as he has not learned to filter out background noise and focus on her voice. This is what the therapist will help him with. She said that it comes with age and maturity and feels that he will pick it up quickly.
Physical and Occupational therapies are both going well. He has PT and OT at CHOP each once a week and he also has PT and OT through the Intermediate Unit coming to Hobbit House each once a week. His teacher has noted marked improvement since September with writing and cutting skills. YEAH!
Next on the physician calendar we have Genetics coming up in January and Hematology/Oncology in February. I will update again soon. Enjoy the holidays and we all wish you and yours a Happy New Year!
Love,
Beth, Nathan, Ethan and Zack
Tuesday, August 28, 2007 1:27 PM CDT
Hello Everyone,
Well, the biopsy results are in – Zack does NOT have Hirschsprungs Disease:) YEAH!!
Zack is playing and running and acting like nothing ever happened. He has been trying to do summersaults. I’m pretty sure that is an activity on the “not to do” list, but how do you make a four year old understand that?! He has been begging us to let him go outside to swing. His doc said no swinging for three weeks. We will still have nice weather in mid-September, so he has a lot of swinging time before it gets cold.
He has had no pain meds since Saturday night:) The swelling is slowly going down and the bruising looks lighter. We were warned ahead of time that he may revert and need re-training with the potty and that he may be afraid to sleep alone. He is a tough little guy as neither of these have been an issue:)
Ethan has been great through all of this. He is very concerned about Zack and has said lots of prayers for him since Thursday. He has even been sharing his most precious toys with Zack! I wonder if things will change when Zack gets the A-OK from the doc?!
Ethan goes back to school on Wednesday Sept. 5th and Zack goes back on Thursday Sept. 6th. They are both very excited! We find out Ethan’s teacher and classmates this Friday. The back to school meetings are actually on different days this year! Nathan was relieved to hear that:) What he doesn’t know yet is that he still has to go with me!
We signed Ethan up for swimming lessons at the YMCA again – lessons start on the 8th. Oh, Ethan was invited to a night birthday party for one of his school buddies this coming Friday! Party starts at 7pm – they will be playing Star Wars outside and then when it gets dark they will be going inside to watch Star Wars the movie. Ethan loves Star Wars, so he is really looking forward to going. The kids have the option of sleeping over, but he is not sure he wants to. He asked if we can come to pick him up really late and if he is still awake he will come home with us, but if he is asleep he said he will call us as soon as the sun comes up:)
I will update again after school starts. I hope you all have a great Labor Day Weekend. Good luck to all the kids going back to school! Thank you again to all who sent prayers and cards to Zack during his surgery and birthday. He loved getting all the mail and phone calls!
Love,
Beth, Nathan, Ethan and Zack
Saturday, August 25, 2007 10:43 PM CDT
Hello,
Just wanted to give you a quick update on Zack’s recovery.
Thursday night was very rough. He woke up every two hours in pain. We ended up propping him up with pillows so that he was in a semi-sitting position. This seemed to help a bit with the pain. We gave him Tylenol w/Codine so that helped him sleep too. Since he slept so much during the day on Thursday, he was wide awake from 4am to 7:20am. All he did was whine and watch “Maggie and the Ferocious Beast” DVD multiple times. I felt so helpless. He asked me to make it stop hurting a few times. I wished I could make him feel better but all I could do was hold his little hand and rub his back. He had a nasty little cough and a very horse voice due to the breathing tube during surgery.
He woke up at 11:30 on Friday morning all smiles. We slowly got ready to go downstairs. He sat very still on the floor watching TV for about 10 minutes, he looked at me and asked for a piece of chocolate. The nurses told us to start out very slowly with clear liquids as the stomach takes the longest for the anesthesia to pass. Well, I figured, let’s try it and see what happens. The chocolate led to a few bites of bread and butter, then a piece of pizza. YEAH!! No problems! His appetite was better after surgery than before:) He spent most of the day sitting. Nanny (my mom) came to visit in the afternoon and she camped out on the floor and played Hot Wheels with him. He tried walking around dinnertime. He walked very bowlegged and wobbly. He sat from then on:) Did not complain of pain except when he urinated – then the crying began.
Last night he slept almost straight through. He only woke up twice and that was just for a drink of juice! Today you would never have known he had surgery. The first thing he said when he woke up – “Is this my birthday day? Do I have presents?” Well, I should have known from that moment that it was going to be a wild and crazy day at the Smith house! He was moving and walking and taking risks that Nathan and I wished he wouldn’t. I feel like a broken record – “Please sit down, please don’t run, please don’t climb”! He only had the Tylenol w/codine twice today:) We ate birthday cake before dinner – Zack’s request! Grandma and Uncle Justin came for a visit tonight. They brought presents. We all played with his toys – Zack had a blast. He is still winding down from all his fun today. I think he will sleep well again tonight:)
I thank you all for your prayers and cards and emails that you sent Zack. He had me read the cards and emails numerous times today. He loves getting mail:)
I will update again soon.
Love,
Beth, Nathan, Ethan and Zack
Thursday, August 23, 2007 8:33 PM CDT
Hi,
Zack had his surgery today and all went well.
Our arrival time was set for 12:45pm. He was not allowed to eat since 11pm last night so when I found out what time we needed to arrive I knew we were in for a rough time. He finally was called back for prep around 1:45 and then wasn’t taken to the O.R. until 3:15pm. He begged for Cheez-It Crackers and juice since around noon. The Urologist came out and talked to us around 5:30pm and said that all went well. The right testicle has been secured and he also put a stitch in the left one just to keep it in place. They took biopsies and we should get results back in a few weeks. He has a nice big incision – they used Durabond instead of stitches on his skin, so maybe it won’t be as irritating as stitches would be. The meatotomy also went well. The General Surgeon came out around 6pm and the rectal biopsy went well. He was not expecting any complications. That biopsy takes 48 hours so, we should know the results sometime on Monday.
He was very agitated when he came out of the anesthesia. He was kicking, crying and trying to get out of the gown. They were able to give him Morphine and he fell back to sleep. Nathan and I were allowed to go to him around 6:30pm and Zack was released around 7:40pm.
He is very groggy – he only woke up twice so far and they were both very short periods of time. Each time he complained of pain, so I’m hoping the Tylenol with Codine that they gave us is going to get him through the night without too much stress.
I will update as he recovers:)
Our love to you all,
Beth, Nathan, Ethan and Zack
Tuesday, August 14, 2007 10:38 AM CDT
HI,
Hope everyone is enjoying the summer.
Things are going well here. Everyone is healthy and enjoying all the summer activities.
Ethan continues to have seasonal allergy problems but his asthma is under control. He had quite a few nebulizer treatments throughout the winter months when colds hit, but his asthma is not slowing him down. In preparation for camp this year, we enrolled Ethan for swimming lessons at the YMCA in January, so we would not have a repeat of last summer’s fear of the pool. It worked! Camp just ended and Ethan did very well.
Ethan started karate at Tiger Schulmann’s MMA in February. He really likes it. When he got his high-white belt in March, he had to start grappling. He is doing very well and he loves it. He passed his blue belt test in June and will be getting his high-blue belt on Monday Aug. 20th. When he got his blue belt, kickboxing started. He feels so-so about kickboxing – it is still new to him. Zack started the Karate Cubs class the beginning of July. It focuses more on gross motor skills than on actual karate moves. He loves it and he has an orange belt. In a week’s time, we spend about 5 hours there.
We enrolled Zack in classes at The Little Gym for the summer. He loves it. His best buddy Zachary is there too, and after class we usually all get lunch and then go back to someone’s house for a play date.
School went well this year for both boys. Ethan graduated from kindergarten in June. Zack did a super job in his first year at Hobbit House. He did the two week Hobbit House Classical Studies Art & Music camp and he loved it. I think his favorite part of the day was eating lunch with his friends. In just a few short weeks, Zack will start the Hobbit House 5 afternoon Stepping Stones Pre-K program.
We were finally able to get Zack into physical therapy at CHOP’s Chalfont satellite office in April and his occupational therapist from Early Intervention started working privately and took him on in July. With help from his preschool teacher, we were able to get an O.T. evaluation through the Intermediate Unit, and his P.T. at CHOP gave us her testing materials to give to the I.U. as an evaluation. Wonderful News – he qualified and will be getting 60 minutes per week physical therapy and 30 minutes per week occupational therapy both to be held at Hobbit House. The I.U. therapies will only focus on the problems that are interfering with his ability to learn – short stature, pencil grip, scissor cutting, playground equipment navigation and steps. For all his other gross and fine motor delays, we will continue with the private therapies as well as the I.U. therapies.
On a medical note, Zack is doing beautifully! Appointments have really spaced out and with the exception of GI and Hematology, all other specialties have been annual appointments and they have all gone well. Genetics is very happy with Zack’s development and growth. He is still following his own growth and weight curves. According to his recent Endocrinology appointment, his height is greater than 2 standard deviations below the curve, which is no surprise to us. They did a bone age at this appointment which came out to be 2 years 0 months. We are waiting for results of the Growth Hormone and IGF1 levels. Hopefully we will have an answer in another week or so. Hematology, Cardiology, GI and Audiology all went well with no changes. Zack’s white cell and monocyte counts are still normal. Now for the big problem appointments – Zack saw the dentist a few months ago and she is pushing for Zack to have his teeth capped and the two cavities in his front two teeth filled. She will give us the definite timing when we see her again in September. In June, Zack had to see an Ophthalmologist who said that he is farsighted and needs glasses. Let me tell you, it is very hard to find frames to fit on little faces. We finally found frames at LensCrafters that have Spiderman webs on the temples. It took about two weeks for him to get used to them, and now he keeps them on most of the time – there are times when he makes up reasons not to wear them. Zack has been cleared by all doctors involved to finally go ahead with his surgery to bring down his testicle, do the meatotomy, and do the rectal biopsy. The date is set for August 23rd. I know – I’m such a mean mom for letting them set the date for two days before his birthday, but this way his recovery should not interfere with school.
We are all headed to Maryland on the 16th for a four day Noonan Syndrome Conference. It will be nice to get together with other NS families. The boys are so excited. I should have some free time in between workshops to take the boys to the Aquarium or head to Washington DC to go to the National Zoo.
I had a big scare in the spring. When I had my annual physical this year, my doctor suggested seeing the cardiologist (whom I haven’t seen for 2 ½ years) just for a routine checkup. When I was there, she ordered a stress test and blood work. The blood work came back normal; however the stress test was abnormal. She said that one of my arteries had a blockage. Panic set in. She wanted me to do a nuclear stress test. I had an anaphylactic reaction to a medication when I was pregnant with Zachary, so I really did not want to take this test. University of Pennsylvania does heart scans – like a CT scan, so I opted for that instead. It is a new test and of course is not covered by insurance yet, but it was well worth the money spent. The results showed zero plaque in my arteries! YEAH! The stress test results were wrong. I have changed my diet anyway, watching the fat and cutting back on caffeine.
I’ve updated the photos!
Enjoy what summer we have left, look forward to school beginning again, and I will update after Zack’s surgery.
Our love to you all,
Beth, Nathan, Ethan, and Zachary
Thursday, December 14, 2006 10:15 PM CST
Merry Christmas!
I hope everyone is well and enjoying the holidays.
Zack has had a few appointments since the last update.
Labs were drawn in September for Hematology to do a platelet aggregation test. The platelet aggregation test aids in the evaluation of bleeding disorders by measuring the rate and degree to which platelets form a clump (aggregate) after the addition of a chemical that stimulates clumping (aggregation). His results were normal, so now he has been cleared by hematology for his orchiopexy surgery again.
Zack had a hearing test and a podiatry appointment in October and both went very well. His next hearing test is in April (yes, we have moved to 6 month appointments instead of every three months!). Podiatry went well also. Zack’s legs have straightened and strengthened without any intervention and now he doesn’t have to go back unless we notice any problems:)
November held a GI appointment, flu shots and an Endocrinology appointment. The GI doctor also gave his go-ahead for the orchiopexy since Zack’s liver enzymes are still normal, so now we wait to hear back from the Urologist. We learned a lot from the Endocrinology appointment. Zack has grown and they are pleased that he is following a curve, however, his curve is way below the charts (even for a child with Noonan Syndrome). They ran bloodwork to check Zack’s growth hormone levels and although he has normal growth hormone level, he has too little of another kind of growth hormone, called insulin-like growth factor type 1, or IGF-1. Quick lesson: Growth hormone comes from the pituitary gland in the brain. When it reaches liver cells, it flips the master growth switch called the growth hormone receptor. This activates the gene for IGF-1, which starts IGF-1 flowing to the cartilage and bones, where it stimulates growth. In Zack’s case, the growth hormone just isn't doing its job. Either it isn't flipping the growth-hormone-receptor switch, or else something is wrong with the IGF machinery. Typically, this can be corrected by giving IGF-1 treatments (just like growth hormone shots), however, with Zack’s history of JMML, the doctors do not feel comfortable giving him any type of growth factor as this could increase the growth of leukemic cells. The endocrinologist said that she can estimate his adult height when his bone age is 7 years. At this point his bone age is 18 months, so we have a long time to go before we know anything. They are still expecting him to be around 5 foot 3 inches which is the height for NS males, it will just take him a while to get there.
The ENT appointment in December went very well. Zack now has annual follow-ups for ENT! I love when the doctors do that:) Now for the bad news…Zack saw the dentist. Seem that he has the dental problem part of Noonans too. His teeth were fine until he was taken off Zantac for the reflux. He now has enamel decalcification on his molars. The dentist wants to cap all his molars to prevent further damage. She also found a small cavity in his front tooth and expects to see another one on the tooth next to it by his next appointment in April. No matter how much he brushes, his system will still cause the cavities. She will decide at that appointment when she wants to do all the work – he will need to be put under general anesthesia and she will do it at either Temple University Children’s Medical Center or St. Christopher’s Hospital for Children.
In November, Nathan, Zack and I went to Potomac Maryland for the Noonan Syndrome International Symposium. It was very scientific, but we learned a lot about Noonans and its genetic make up. Ethan stayed with Grandma and Grandpa while we were away and he thoroughly enjoyed sleeping overnight at their house. He keeps asking when we are going away again and if he can sleep over again:)
School is going great for the boys. Ethan is learning to read and he is very excited to read to anyone who will listen. He has taken to full day classes easily and he has made many new friends. Every Wednesday he goes back to Hobbit House for Spanish classes. Senora Cyhan offers afterschool classes to Hobbit House graduates. Ethan loves going as he has a chance to socialize with some of his old buddies. Usually after class is over, the kids get a chance to run around together outside, but now that it is getting cold, I have a feeling this will stop until spring – by choice of the moms not the kids:) I have been classroom mom a few times for Ethan’s class at Corpus Christi. It was so fun seeing what he does in school and how he interacts with the other children. I did get quite a few “hi mom”s with a wave when the teacher wasn’t looking. I was in for a treat when I filled in as lunch mother. I was the “new” mom and the class let me know it. All-in-all they were good, but there were a few that really tested the limits:)
Zack loves Hobbit House! He made two best friends – Zachary and Nicholas. Wanna hear something funny? The other Zachary was born on the same date as our Zachary just the year before. Zack has adapted really well to school. His speech has improved significantly, his balance is better, and he is a social butterfly. We did have tears and clinging for the first two weeks of school and every now and then, usually after a longer break, but he usually grabs his schoolbag and runs in the door with a smile. I was party mom for their Halloween and Thanksgiving parties. I have never seen a group of 13 three and four year olds so well behaved and quiet!
Both Ethan and Zack got their flu shots this year! Zack qualified due to Noonans and this year Ethan qualified because he was diagnosed with Asthma. He was doing well on Singulair with a rescue inhaler until Thanksgiving when he had a serious flare-up which led to pneumonia. Since then Ethan has needed nebulizer treatments. He is dealing with it well and it has not slowed him down a bit.
I will end this novel here and give your eyes a break:) We wish you all a very Merry Christmas and Happy New Year! Hope to see a lot of you over the holidays.
Love,
Nathan, Beth, Ethan and Zachary
Saturday, September 2, 2006 2:19 PM CDT
Hello!
A lot has happened since the last update. Let’s start with the medical things first.
The year started out on a good note medically for Zack. Doctor appointments have finally spaced out and the ones he has seen so far have all been positive. Zack started the year with his annual Genetics appointment. The geneticist is very happy with Zack’s progress! He did say that even though Zack has grown in the past year, he is still not on the growth charts – not even on the Noonan’s chart for height yet, but he is not worried about that as he is keeping his own curve. The endocrinologist was very pleased with his growth since the last visit. His bone age went from 0-3 month bone age in January 2005 to 15-18 month bone age in May 2006 which is appropriate growth for a 16 month period. Zack’s Oncology appointment in February went very well. All blood counts are holding in his normal range and the oncologist said that she wants to follow him every six months, until he is six years old, through the Hematology department now instead of the Oncology department!! It’s amazing what a change in wording can do for your spirit:)
Until June, Zack was still having elevated liver enzyme issues. His GI doctor sent us to a Metabolic Disorder doctor who tested Zack and said that he has no metabolic problems. Good news, but we were still stumped with the liver enzymes. We asked the GI doctor again if the medications he was on could cause the problem, and he decided to try taking Zack off his Zantac and Reglan. Well what do you know! Zack had labs drawn on August 1st and his liver enzymes are completely normal! We are having the labs drawn again the end of October just to be sure.
We had two graduations at the end of the school year – Ethan graduated from Pre-K at Hobbit House and Zachary graduated from Early Intervention! We are so proud of both the boys for all their accomplishments this year. Ethan is now getting ready to start Kindergarten at Corpus Christi School and Zack will be starting preschool at Hobbit House. I cannot believe that both boys will be in school in just another week! What will I do with myself?! As I stated above, Zack graduated from EI, so he has no more therapy sessions. He was evaluated through the Intermediate Unit (school district) and he does not have the 25 percent delays in Cognitive, Occupational, or Speech in order to receive services. The evaluators said that he possesses the skills of a 3 to 4 year old! I was so excited – since he started out so far behind his peers, I guess I expected him to still be behind. He does still have a 25 percent delay physically, however, he does not qualify for IU services since his physical delays will not interfere with his ability to learn. We are currently looking into private physical therapy for him. Now it’s just a matter of who accepts insurance.
Zack has grown so much this year! He is now 20 pounds 6 ounces and 32 inches tall!! For the summer, I had Zack enrolled in a mommy and me preschool class. He loved it and made a few new friends. It was a great class – they followed a normal preschool schedule, the only difference is that the mommies were there to help if needed. Ethan has also grown a lot this year – in more ways than one. Ethan attended summer camp this year at Gwynedd Mercy College Day Camp. He had a wonderful time! He learned swimming, soccer, tennis, and archery (yes, archery, with real bow and arrow!). Ethan had trouble with swim lessons in the beginning of camp because on day two of camp, he slipped getting out of the deep pool and got a few abrasions on his face and lost his first baby tooth. This frightened him enough that he refused to go near the deep pool for over a week. The counselors were very kind and let him take his time and build up his confidence.
Nate and I finally decided to hire a contractor to have some work done on the house. We just did not have the time to do it ourselves like we originally planned. The first floor has a fresh coat of paint and nice new trim – finally no more white walls :) We had the contractor to re-do the kitchen ceiling. The original drop ceiling with the 70’s fluorescent lighting panels are now gone. Some of you may remember the stone hearth we had in the family room – it is now covered with new carpet and a wall has been built around it with a nice mantle on top. The living room and dining room also got new carpeting, but I just cannot figure out how it already has spots!? Oh, yeah, I have two boys!
So now it’s off to school for both boys in one week. I still cannot believe it. Nate and I have to go to the usual Parent’s meetings in the beginning of the school year, however, wouldn’t you know it – both schools meetings are at 7pm on Thursday night! Oh well, I’m sure this will happen many times over the next few years.
Hope you are all well and good luck to all the kids going back to school!
Love,
Beth, Nate, Ethan and Zack
Friday, December 9, 2005 8:08 PM CST
Happy Holidays!
I hope everyone is well. Things here are going rather well. One major scare was in mid-October, Zachary was admitted to the Oncology Ward at Children’s Hospital of Phila. for a high fever and petechiae (little red spots usually due to a low platelet count) on his chest. His pediatrician had us rush him to the emergency room thinking that his JMML was beginning to show. Much to our relief, his platelet count was normal and his white cell count and monocyte percentage were fine. They kept him for three days as they waited for a blood culture and to put him on IV fluids so he wouldn’t dehydrate since he didn’t want to eat or drink. The Oncologist that was following him said that he had a virus and it just had to run its course and that it was definitely not his JMML. Boy, were we relieved! Sitting in the ER, waiting for the blood test results to come in, brought back some of the old fears we had when he was first diagnosed with JMML. I had finally gotten to a point where his Noonan’s problems overshadowed his leukemia.
Zack is still having issues with elevated liver enzymes. They went up again about 6 weeks ago, but on his blood work last Wednesday, they were back down to normal. His GI doctor has been testing for multiple things all of which have come back negative so now we are waiting to hear what he wants to do next. At the last appointment, he suggested doing a liver biopsy. I hope we don’t need to go that far as this kind of biopsy could be dangerous for him.
Zachary has had a bunch of follow-up appointments since the last update and I am happy to say that each one has gone very smoothly. Just this past week, Zachary had his final Nephrology appointment. We are so happy to be removing another doctor from the routine. Since the summer, he has been released from Allergy, Cardiology, Immunology and now Nephrology!
Good news on weight gain…Zachary is now 16 pounds 10 ounces! He has also grown a little in length too…28 ¼ inches. His endocrinology appointment went ok. The doctor raised some questions about his slow growth since the last appointment so she ran some bloodwork to check his growth hormone levels. All levels were normal so she doesn’t need to see him for six months. She decided the very slow growth is just Noonan’s related.
Zack has been cleared by Allergy to eat dairy products and he loves it! This makes cooking and shopping so much easier. Until you have to remove dairy from your diet, you don’t realize how many products contain it. Now the only foods/juices he cannot have are pears and apricots. We have taken peaches out too since they are so close to apricots.
From the therapy standpoint, Zack is doing wonderful! Since Thanksgiving, Zack has been walking 100 percent of the time and is stringing together 2-3 and sometimes 4 word sentences.
In September and October, Zachary had a six week intensive feeding therapy session. His Occupational Therapist and his Nutritionist rotated days so one of them would come to the house at 6pm for 45 minutes every day for the six week period. The first half of the therapy was to increase his variety of flavors of pureed foods as he was on a Green Bean and Chicken diet which he chose. The second half of the therapy was to start table foods. After the first three weeks, his variety was much bigger including dairy products with no adverse reactions. We were very proud of his progress and very grateful to the therapists. By the end of October, he was eating Mac & Cheese, pasta with meat sauce, bread & butter, and pizza crackers. We were shocked! He took to the table food so quickly. Again we were extremely proud of him. He even surprised his therapists who didn’t expect it to go that easily. Now, all baby foods are done and he is 100 percent table foods. He is still having trouble with some textures like oatmeal and applesauce but if it crunches, he has no trouble. We had a wonderful Thanksgiving dinner and Zachary was able to eat the same things we did. He does have odd taste for a 2 year old though…he really enjoyed the cole slaw, black olives, and jellied cranberry sauce. Speaking of odd taste, Ethan had his Thanksgiving party at school and when I picked him up, his teacher told me that he ate all the raw broccoli on the veggie tray! None of the other little ones liked it so Ethan ate it for them. Not many 4 ½ year olds like broccoli especially raw and without cheese sauce. Ha Ha.
Thursday afternoon I took the boys to the mall to see Santa. They were both so excited. I heard Ethan’s list of what he was going to ask Santa the entire way there. Of course when Santa asked him what he wants, Ethan got all flustered and couldn’t remember a thing. Neither one cried at Santa this year, a first for the Smith household.
We wish you all Seasons Greetings and Happy New Year!
Love,
Nathan, Beth, Ethan & Zachary
Monday, August 29, 2005 10:35 PM CDT
Hello Everyone,
I am so sorry I have not updated the site for so long. A lot has been happening around here with Zachary. First, Zack just celebrated his second birthday on August 25th! I cannot believe he is “2”! We had a nice family dinner on Friday night. Zack loved all the attention and he blew out the candle on his cake all by himself…he also made us relight the candle multiple times! This past Saturday, Zachary finally hit 15 pounds! That is reason to celebrate too! He had been in the 14 pound range for way too long.
On a medical note, things are just crazy. From the oncology standpoint, Zack’s JMML is still “stable”. His white and monocyte counts have gone up and down a couple times but nothing for us to worry about as they returned to “Zack’s normal level”. Zachary had to visit the Emergency Room twice with one admittance this summer. First time was for severe constipation (thanks to Noonan Syndrome) and the second time was for an electrolyte imbalance, specifically a very low potassium level which resulted in an overnight admittance to the Nephrology Ward. Both problems have been corrected by medication and there should be no long term issues.
In May, we started taking Zack to a new GI doctor who ran a bunch tests (milk scan, barium enema, blood work) and started Zack on a medication called Reglan which speeds up gastric emptying. For Zack, this medication is wonderful! He started eating more and what’s best is that it stays in. He is having problems with high liver enzymes and the GI doctor does not know why so we are currently in a wait and see mode…so what else is new!
The surgery scheduled for August 11th to correct the ascended testicle was cancelled due to the electrolyte imbalance. He was also to have a biopsy to check for something called Hirshsprung Disease – the doctor is not convinced that his constipation is only related to the Noonan’s. I’m glad they are checking for medical problems, but how many diagnoses are they going to put on this little guy?! Anyway, surgery will be rescheduled when all his levels normalize.
He has Allergy and Endocrinology appointments and another hearing test (just routine - all have been normal so far) coming up next week. Another busy week!
In June, Zack took those precious first unassisted steps! He can do 3-4 steps before falling sideways. I am so amazed how far he has come with his therapies this year. His vocabulary has grown to 100 words and his special instruction teacher has taught him a bunch of baby signs, so between the signs and the words, he can really get his point across. We see the terrible twos are starting to set in when he has trouble expressing something that he doesn’t have a sign or word. I was just informed by Early Intervention that he no longer qualifies for Speech Therapy since his word base is so large, he is not considered to be in the delayed category. I argued the point that he only says words not phrases or sentences, and that kids with Noonans have the low tone and they usually need therapy for articulation but they still said he is not considered delayed. With his sensory integration, he is doing so much better with touching different textures but eating textures are still a battle. He is definitely following the Noonan characteristic of faddy eating as his diet consists of green beans, sweet potatoes, and chicken pureed baby foods. He will eat crunchy table food though, but anything in between just sets off his gag reflex. We are trying to get a therapist to come in to help with feedings to see if we can get him to eat a wider variety of flavors and textures.
Nate and Ethan are battling colds right now, so Zack and I are trying to avoid them. Ethan had a wonderful school year and a fun three week art and music camp at his school. He starts pre-Kindergarten at Hobbit House on Sept. 7th. He is so excited to go back and see his friends but he is a bit upset that he will have a new teacher…he really liked his teacher last year and he doesn’t understand the concept that each year you get a new teacher. Wait till he finds out that he has to go to a new school when he starts Kindergarten!
I have updated the photo album again. I promise this time that I will do better with the updates and not wait so long. Our love to you all.
Love,
Beth, Nate, Ethan and Zack
Wednesday, February 16, 2005 7:16 AM CST
Hi and Happy Valentines Day!
It was a busy holiday season and start to the new year in this household. We had Christmas Eve festivities with Nate’s parents and his brother Bryan’s family and we celebrated Christmas Day with my Mom and aunts. The boys totally enjoyed being the center of attention and being spoiled with toys and love by everyone. I didn’t realize it before, but, both the boys can be such “hams”! Even at such young ages, they learn quickly what makes people laugh and know to keep it up. New Year’s was a bit of a flop this year. Both Nate and Ethan were sick, so Zachary and I (who were “hiding” from the germs in the safety of the living room) rang in the New Year together. I did talk to Nate and then Mom on the phone within minutes of the ball drop.
Now onto the medical update. Zack has had a bunch of follow up appointments since the last update. First, Oncology went really well again. His white cell count was lower and so was his monocyte level. So far, both levels keep decreasing with each appointment. Now we need to keep praying that this trend keeps up and we hear a definite “transient JMML” diagnosis. We go back for another follow up on April 21st. Zack’s Ophthalmology (eyes) appointment went well. He is starting to show signs of far sightedness but it is nothing we need to worry about until he starts school and his next follow up appointment is in two years. He passed another hearing test with flying colors and will continue with the quarterly follow ups.
At Zachary’s Allergy follow up we were given the go ahead to start combination foods and foods containing wheat products. If he makes it through the trial period on these foods without aggravating the allergic colitis, then we can move onto trace eggs and trace soy (food items that include eggs and soy as an ingredient), then soy yogurt and soy cheese. At his next appointment in August, the doctor will determine if he can try milk products. This opens up a wide array of options for him. Hopefully some of these new foods will have higher calories and will help with his weight. The nutritionist is helping us pick the foods which will maximize his intake both with calories and protein. We ran into a few problems the past couple months with Zack’s weight gain which has remained constant at 14 ½ pounds. He has had problems with constipation (thanks to Noonan Syndrome) so we have been playing around with the correct dosing of a medicine called Lactulose, and for some reason we just cannot hit the perfect amount to keep him regular. One thing we tried to alleviate the constipation was Pear Juice which unfortunately aggravated his colitis and once that happens it usually takes a good two weeks or so to clear up so no weight gain during that time. Another thing keeping the weight down is his activity level. He has conquered crawling and he has now moved on to walking while supported by toys and furniture! This is a wonderful achievement and we are so happy to see him so mobile, although if you ask the cat, I’m sure he would tell you otherwise.
The Immunology follow up gave us hope. His low t-cell count has resolved and all his levels are normal. The immunologist said that the previous results might have been a consequence of his stress or illness related to his JMML. He is cleared to have his live vaccines so we are in the process of coordinating it with the doctors as I also need to be vaccinated against chickenpox since I never had it as a child. We still need to be careful during flu season and would you believe that Ethan has yet another cold?! I know he loves school but I don’t love the germs he keeps picking up.
Endocrinology and Urology were the most recent and not so good appointments. With endocrinology, Zachary’s size calculates to be very small – a 3 month old size - which is not a bad thing at all. It means that the lower the age calculated, the longer after the age of 18 years he will continue to grow. They average his final height as a NS child to be around 5 foot 5 inches and he is not a candidate for growth hormones as they would not change his final height. When the endocrinologist was examining Zack, she noticed that his right testicle was not descended. This came as a shock to us since we were under the impression that all previous doctors had found both. Anyway, she referred him to a urologist who confirmed the undescended teste but said that it was an “ascended” testicle, meaning that it was previously down in the correct place but as Zachary grew, the one testicle did not continue down. Unfortunately, this requires surgery to correct. He has to be cleared by Hematology on Feb. 22nd before we can schedule the surgery but it looks to be sometime in April. Poor thing…now everyone knows his “private” issues!
Zachary is doing extremely well with his therapies. He is crawling like a champ and walking along toys and furniture. His sensory problems are improving. He tolerates the bath water on his hands and feet so much better now. The 2 minute baths have turned into real tub time. This is more relaxing than speed bathing! Zack started a new therapy in January – he now has speech therapy one hour a week. After two sessions, he added two new words to his vocabulary!
Ethan thoroughly enjoyed our snowstorm a few weeks back. We got about 12 inches of snow! It was quite cold, so his outside play time was cut short – amazingly by his choice! Even with short periods of time outside, he was still able to create a few snowmen, which made him very happy. School is going great and he still loves it. We are in the process of getting ready for his 4th Birthday party. Most of his classmates are coming to the party so he is extremely excited. I cannot believe that he is turning “4”! Where do the years go?!
Well, I will end this novel here and update again soon. I’ve changed the pictures in the photo album too. Our love to you all!
Love,
Beth, Nate, Ethan & Zack
Tuesday, November 16, 2004 9:50 PM CST
Hello!
Hope everyone is doing well. We have new test results for Zachary. Back in April, Genetics drew blood to test for a condition called Noonan Syndrome. The results came back positive - Zachary has Noonan Syndrome. This looks to be the answer to all of his problems! We are still learning about NS but it seems that with age and therapy he will outgrow most of his problems. There are a lot of anomalies that go along with Noonan Syndrome and Zack does have a few of them which I will explain.
About 50-80 percent of Noonan Syndrome children have heart problems so we took Zack to see a Cardiologist immediately upon finding out and he has no heart defects and follow up is not necessary – the cardiologist said that if the NS heart problems are not present now, they will not show up later. Big relief!
We did find out one really interesting piece of information – JMML is linked to Noonan Syndrome and in 10 percent of the NS/JMML patients, the JMML is transient (meaning dormant, never develops). Please pray that Zack is in this percentage. His Oncologist and Geneticist seem very hopeful that he does have the transient form but only time will tell, so we are still playing the wait and see game with this horrible disease. Zack will continue to see Oncology on a quarterly basis.
Zack has been referred to Endocrinology which deals with growth. The average height of NS males is around 5 foot 4 inches. The Endocrinology Department will monitor his growth from now through age 9 and determine then if growth hormones are necessary. He had a “bone age” done on October 25th and we are awaiting the results.
The anomalies that the physical therapist is working on are his gross and fine motor delays. Zachary has hit another big milestone -- CRAWLING! On Friday morning while we were in the office waiting for the GI doctor, Zack got up on all fours and crawled forward a few feet! We were so excited!
His occupational therapist is working on his sensory integration problems. She is introducing him to different textures to desensitize the palms of his hands. Since we figured out that he dislikes the feel of the carpet, we got a tumble mat to cover the carpet hopefully encouraging him to flatten his hands and crawl more. She is also working on his hypergag reflex and feeding. So far it seems to be working really well. She will help us introduce textured foods and avoid his gag reflex.
Zack’s nutritionist is helping us with his diet. He is on a higher calorie diet with the hopes that he will gain some weight. It is a bit hard to increase his calorie intake when he cannot have anything with dairy because of his milk allergy and we need to be careful not to aggravate his allergic colitis. He seems to be doing fine with the Canola Oil added to his foods. Zack is a picky eater – he does not like many of the fruits, but he does like veggies. He just tried turkey and he actually liked it! I mixed it with sweet potatoes thinking he would eat it if the taste was disguised, but he actually liked it separate! From what we have heard and read about Noonan Syndrome, he should start to outgrow his feeding problems.
Zack had an appointment with the pediatrician on November 8th and he weighed in at 14lbs, 6ozs! We are very happy with his weight gain since last month. Also, she gave Zack the second half of his flu shot. Again, making us very happy. Unfortunately, they don’t have enough to give it to Ethan. Maybe January they said. Oh well, we did all we could to get the flu shot for Ethan, now we just have to be extra careful this winter.
Other than the monthly pediatrician appointments, at this point Zack has no other appointments until January! Finally, a nice break from the trips to CHOP.
Ethan had his first class trip just before Halloween. We went to Merrymead Farms. He had such a good time on his first hayride. Pumpkins were picked and an ice cream treat followed. The following Monday, Nathan went to school with Ethan for the Father’s Pumpkin Carving. Ethan loves school. Everyday he asks if it is a school day. He is making great friends and most of the kids in his class this year are signed up for the same class as Ethan next year (5 half days).
I’ve updated the photo album.
Love,
Beth, Nathan, Ethan & Zack
Friday, October 22, 2004 10:05 AM CDT
Hi,
I just want to give a quick update before the next round of appointments. Things have been pretty good here. Ethan started Hobbit House Preschool on September 8th and he loves it. He has a small class and he has made some great new friends. Fun part is, most of them have little brothers/sisters that are Zack’s age and once they are old enough they will probably be in the same class at Hobbit House.
Zachary’s first birthday party was a hit! Zack enjoyed himself thoroughly. I did not make a special cake for him after all. Since he rarely puts his fingers in his mouth, I figured he would be fine with a regular cake. He did play with the icing and he loved squishing it between his fingers. I think he loved all the attention and finally got to meet some relatives and friends for the first time. I was a bit worried that he would be really shy and/or cry since he has never been around a large group of people, but he did great.
We have all been suffering with allergies this fall. Between all the rain and the falling leaves, we have been hiding indoors. Zack’s Immunologist said that we all have to get the shot this year, Zack included. Last year, Ethan was the only one who got the flu shot. This year, with all the flu shot problems, the pediatrician gave Zack his first half of the flu shot but now we cannot get an appointment for the second half. They will not give Ethan the shot, even though he just started school and lives in the same house as Zack! Our family doctor won’t give it to Nate or myself until January. We are crossing our fingers that Ethan doesn’t bring it home from school.
Well, an update on Zack’s appointment with Immunology. When we first went in, the doctor put our minds at ease by telling us that it is not as serious as she had first thought. Let me tell you, we both breathed a sigh of relief. When the doctor got the results of the bloodwork, she was only given the t-cell counts. Before our appointment, she pulled his other labwork and compared his overall white cell count (which is on the high side) to the t-cell count and when calculated, it made the t-cell count near normal. We still need to be careful this flu season because we are not sure how the t-cell are functioning. The doctor will not test the function until the next appointment in January. She saw no reason to keep Ethan home from school this year. If he gets sick, we need to separate the boys, so this should prove to be a very interesting winter since I’m sure Ethan will be bringing home tons of germs from school.
The CT scan went well also. The inner ear bones are normal, so we probably will never know what caused his deafness in the left ear. Every so often someone throws around the question of him getting antibiotics at birth, but that is as far as it goes. We never get a straight answer about that one. Zack also had a hearing test and has normal hearing in his right ear. We were so happy that he cooperated this time and completed the test.
We ran into some feeding problems again. Something aggravated his allergic colitis and we had to take him off 4 different baby foods and the Safflour Oil (extra 200 calories per day). Needless to say, he lost some weight. He was just under the 14 lb mark the beginning of September, now we are about 13 lbs, 8ozs again. The nutritionist is changing his formula from Nutramigen (27 cal/oz) to Neocate Jr (30 cal/oz). The Neocate Jr is also hypoallergenic so he should not have any problems digesting it. Of course this formula is much more expensive so the insurance company is giving us a hard time at the moment (surprised?! Ha ha!). Also, she put him on 3 teaspoons of Canola Oil a day to get the additional calories. Hopefully he won’t have any issues with this one.
Zack has also started with Occupational Therapy. The therapist comes once a week will focus on his sensory integration issues, hyper gag reflex, and feeding techniques. She has pinpointed his sensitive spots as the palm of his hands, so now we need to work on desensitizing it. She also gave us things to do daily to decrease his hyper gag reflex – let me tell you, Zack really loves this…NOT. We have to rub our finger along the gum line and along the edge of his tongue. I have actually managed to avoid his gag reflex so far! His 6 month review for Physical Therapy went great! He is now getting physical therapy every other week instead of every week. He has really been improving quickly with his physical therapy…he is just about to crawl…he does the commando crawl and he will get up on hands and knees and rock front to back. His sensory integration with the palms of his hands may be holding him back from actually crawling.
I will update again as I get information from his next appointments.
Love,
Beth
Tuesday, August 10, 2004 9:34 AM CDT
Hello,
Wow…it has been a busy, information filled couple of weeks since I updated you! Zachary finished his latest group of appointments. He saw ENT on July 13th and he has no ear infections and his tympanometry (ear drum test) was normal. They tried to do a hearing test but Zack didn’t want to cooperate…he was more interested in his shoes and his reflection in the window, so we had to reschedule for Sept. 1st. Also the doctor said that from an ENT point of view he has no problems and referred him to an Otolaryngologist (Nov. 8th) who deals with hearing loss problems and also ordered a CT scan (Sept. 2nd) to be done to check the bones of the inner ear.
We went to see GI on July 19th. The doctor confirmed that Zack has Allergic Colitis and that since we switched him onto 100% hypoallergenic formula, the allergy is clearing up. He cannot be sure it is cleared completely without doing another flexible sigmoidoscopy but he doesn’t feel that it is necessary to test again at this point. Also, he bumped up the strength of Zachary’s Zantac prescription hoping that it will help with his hyper-gag reflex. He is leaving feeding and weight issues up to Allergy and Nutrition now, so the next follow-up appointment with him is in November.
Wednesday, July 21st Zack had his Oncology visit. Blood work results are near normal again!! We asked if the results are near normal for a leukemia patient or a healthy child his age and she said they are near normal for a healthy child his age so we were very excited. Again, his monocyte level was slightly elevated but it hasn’t changed since the last visit. While we waited, the oncologist had a short conference with CHOP’s JMML specialist, Dr. Bunin, who decided that Zack will NOT have another JMML test done. Since his blood levels are fine, they may not be able to test it for JMML, so she said that as long as his levels at his next appointment in three months are the same, he will be followed every 6 months to a year until he is 5 years old. The oncologist also ran another blood test to check his immune levels to see if it is safe to give him his one year live vaccines. Unfortunately, the test results were not good. Zack’s t-cell count is low. He needs to see Immunology on August 26th. All we know right now is that Zack is more vulnerable to germs than normal. We have not been able to get any more information from them, so, we just have to wait and keep anyone sick away from Zack. Sadly, Ethan has had to bear the brunt of this bad news because we cannot let him play with his friends until we learn more.
Thursday, July 22nd Zack had some allergy testing done. They did skin testing to see if he has any food allergies. Pool little guy had to get 16 skin scratches on his arms to check 14 different foods. Luckily, he does not have allergies to the foods they tested, so he is now allowed to eat more than just formula and rice cereal. We have to start out on Stage 1 baby foods again and remain on them until he goes back to allergy in January. Zack is not allowed to start whole milk at a year old because of the milk allergy he was diagnosed with when he was 2 months old. They said that we can try a milk challenge (give it to him and see if there is a reaction) one year after all dairy was eliminated from his diet. Since he is on formula for the higher calories, we will not offer milk until his weight is under control. We are working with a nutritionist to make sure that his daily calorie intake is appropriate for the weight gain we want to see. Right now, the goal is for him to gain at least 1 pound a month. He had his weight check on July 29th and he was 13 pounds, 5 ounces. Coming along nicely since the last weight check…the pediatrician was happy.
Occupational Therapy came out to evaluate Zachary. We haven’t heard back yet if they will be coming out also. With Physical Therapy, Zack is sitting unassisted for a few minutes and he has started to crawl. We are so happy with his progress! You can see in his expression how excited and proud he is when he crawls to get his toys.
Party preparations have begun! Ethan said that he is in charge of picking out the balloons and the party hats. He is so excited…he’s a party boy! The really hard part has begun – I have to find either a bakery or a recipe for a milk, egg, and soy free birthday cake. So far this seems to be an impossible task. Any suggestions would be greatly appreciated.
Once we learn more from Immunology, I will update again.
Love,
Beth, Nate, Ethan and Zack
Monday, July 5, 2004 10:35 PM CDT
Hello Everyone,
I’m sorry I haven’t updated for so long. Hope you are doing well. Ethan is spending lots of time at the playground running around and making new friends in the neighborhood. He asks daily to have his pool filled. I think Zack is enjoying the warm weather too…he loves going for walks in his stroller and playing with his bare piggy toes! This past week he had his first ride on the baby swing outside. He loved it – a great big smile from ear to ear!
Zachary finished his last batch of appointments with flying colors. He had his appointment with GI (Gastroenterology) on April 26th. The doctor agreed that he had reflux and put him on Prilosec (which was supposed to be stronger than the Zantac he was on). It made him worse so we are back on Zantac. Weight wise he is still gaining slowly. His last weight check on June 28th was 12 pounds, 12 ½ ounces. He had an Upper GI with Small Bowel on May 10th and all was normal. There was some bloodwork done for GI and all came back normal. On May 27th, Zack had an Endoscopy and Flexible Sigmoidoscopy, both with biopsies. The biopsy results of the Endoscopy came back normal but the Flex Sig biopsies came back showing that Zack has an allergy. The doctor has taken Zack off breastmilk and he is now on a high caloric hypoallergenic formula. Zack is still allowed to have his veggies and cereal, but we cannot introduce any new foods until his allergy clears up which should take 4-6 weeks. We see GI again on July 19th. He has an allergy appointment but the first available date was September 27th so I guess we will wait to find out what Zack is allergic to. Zack had his Oncology appointment on April 28th. Again, his blood results are near normal. His monocyte level is still a little high but it is lower than the last visit. They also ran a fetal hemoglobin level which came out at 2% which is normal for his age. Usually with JMML, fetal hemoglobin is elevated above 10%. There is still the discussion of retesting for JMML. The doctors want to retest with bone marrow but he is not big enough to get the amount they need for the test so we need to wait. He has had a nice long break…his next Oncology visit is July 20th. Zack also had an appointment with ENT (Ear, Nose, Throat). His ears are fine. The next visit is July 14th with the Audiologist for a hearing test. Hopefully he has some hearing in the left ear…keep your fingers crossed.
Physical Therapy is going really well. He has great neck control and he is much stronger and he now loves belly time and even rolls over and over and over. Even the cat helps “encourage” him by walking just out of Zack’s reach. Kids and cat fur are magnetic. He has started scooting forward to get his toys. We are now working on sitting unassisted and crawling. He had his three month review on June 29th and he accomplished five out of six of his six month goals so we are very proud of him for the progress that he is making. The therapist believes that it is the GI allergy that is holding him back and causing his motor delay. She also says that Zack may have some Tactile Sensory Integration issues (he doesn’t like certain things touching him – such as water on his hands and feet) so an Occupational Therapist is going to come evaluate him.
Zack’s first birthday is quickly approaching! I cannot believe how fast this year has gone! We are planning a big birthday bash so hopefully many of you will finally get to meet our “little peanut”.
I will update again soon after this next round of appointments…I promise!
Our love to all,
Beth, Nate, Ethan & Zack
Sunday, March 28, 2004 9:19 PM CST
Hello,
We have been very busy with doctors appointments since the last update. We still see Zack’s pediatrician regularly for weight checks (2-4 times a month depending on his weight gain). The most recent visit on March 22, Zack weighed in at 11 lbs., 2 ozs., and measured 24 inches in length.
Zachary was seen by Oncology in January and February for blood work and a check up. Both appointments went smoothly. He is still symptom free and the blood results were perfectly normal both times. Because of this, we are now on an every other month appointment schedule. Zack will be switching oncology doctors because his doctor is leaving CHOP the end of April. If all stays normal, he will have another bone marrow aspiration in August to check for the JMML. We are hoping he has what they call a Transient Myeloproliferative Disorder, meaning the disease goes into spontaneous remission.
In mid-February, we had an appointment with the Diagnostic Center at CHOP. They try to fit all problems into one diagnosis and coordinate testing and appointments with other departments. They were unable to fit Zachary into any particular syndrome. The main concern is to find out what is causing his weight gain issues, so lab work along with a Sweat Test and an appointment with Genetics was ordered. The lab work came back good except his cholesterol and triglyceride levels are elevated and his pH showed to be mildly acidic. For this, he was referred to GI – Gastroenterology, who we will see in April. The Sweat Test came back normal showing he does not have Cystic Fibrosis.
Genetics appointment on March 17 was long and detailed. Again, they are focusing on his weight and size. They ordered a round of blood work which takes 6-8 weeks for results and a skeletal survey to see if his bones look normal. The majority of the tests are routine and they don’t expect to find anything bad.
Both the pediatrician and CHOP recommend that Zack be seen by the Montgomery County Early Intervention Unit for a delay in motor skills. A physical therapist will be coming to the house once a week for one hour to help him learn how to sit by himself and to roll over.
Ethan celebrated his 3rd birthday in February. He had a party at Happy Tymes Family Fun Center. He passed his 3 year pediatric appointment with flying colors. Now we begin seeing a dentist annually. That should be fun! We are in the process of potty training which is going rather well.
Well, that’s about all for now. Zack’s next round of appointments is GI on April 26, Oncology on April 28, and ENT on April 29. I will update again after that. Our love to you all.
Love,
Beth, Nate, Ethan & Zachary
P.S. I added new pictures so check out the photo album!
Friday, January 9, 2004 10:36 PM CST
Hi,
I hope everyone had happy holidays! Ours was very nice. Christmas was as hectic as it could be with an almost 3 year old and New Year’s was quiet. Zachary and I along with Nanny (my Mom) welcomed 2004. Nathan and Ethan decided midnight was way past their bedtimes.
I want to thank everyone for your well wishes since we found out about Zack’s diagnosis. Big thanks to all from Paoli Methodist Church for your cards, prayers and the delicious meals that you sent.
Zachary had his monthly appointment at CHOP on 12/31/03. Things look good! White blood cells 17.6, Hemoglobin 10.4, platelets 222 – all within normal ranges. His monocyte level is still high at 15.8%. Both his spleen and liver are normal size. So, this was a good day. His next appointment is 1/21/04. The oncologist gave us the treatment plan that Zack will follow as symptoms appear (so far he is symptom free!). One of the treatments is a spleenectomy so Zack’s immunizations are being accelerated. He has had all his immunizations up to the one year live vaccines (the live vaccines cannot be given before age one).
Zack has weekly weight checks at the pediatrician’s office. We are working with a nutritionist at CHOP and she recently bumped him up to a 24 calorie diet to put more weight on him. So far he is averaging about a 3 ounce a week gain. On 1/5/04 he weighed in at 10 lbs, 1 oz.
We received great news! Ethan is a 6/6 perfect bone marrow match for Zachary! We harvested Ethan’s cord blood from birth, so if Zack needs a bone marrow transplant, Ethan’s cord blood will be used.
Zachary is doing great. He loves to “talk” and he smiles a lot. Santa was very good to him and he loves all his new toys – especially the musical ones. Take a look at the photo album, I’ve added some pictures.
Our love to you all,
Beth, Nathan, Ethan & Zachary
Thursday, December 4, 2003 1:03 AM EST
Hello all,
Zachary has tested positive for JMML (Juvenile Myelomonocytic Leukemia) a rare childhood leukemia. This disease has not "popped up" yet but the doctors at CHOP said that he could get it within months to 1-2 years. As of right now, he has no symptoms.
He is still a tiny little fellow weighing only 8lbs, 11ozs. The doctors have him on fortified feedings to increase his caloric intake so that he will gain weight quickly incase they need to start treatments soon. 12/3's bloodwork came back really good - white cell counts have lowered, the red blood cell counts are slowly increasing, and his platelet counts are where they should be.
We are awaiting bone marrow match test results that were done on Nate, Ethan and myself. Hopefully we will have a match.
Zack is such a happy baby...he loves to smile and he can "talk" your ear off :) He finds everything that big brother Ethan does amusing.
As things happen I will keep you updated. Until then, you are all in our thoughts and prayers.
Love,
Beth, Nathan, Ethan & Zack
Thursday, December 4, 2003 1:03 AM EST
Hello all,
Zachary has tested positive for JMML (Juvenile Myelomonocytic Leukemia) a rare childhood leukemia. This disease has not "popped up" yet but the doctors at CHOP said that he could get it within months to 1-2 years. As of right now, he has no symptoms.
He is still a tiny little fellow weighing only 8lbs, 11ozs. The doctors have him on fortified feedings to increase his caloric intake so that he will gain weight quickly incase they need to start treatments soon. 12/3's bloodwork came back really good - white cell counts have lowered, the red blood cell counts are slowly increasing, and his platelet counts are where they should be.
We are awaiting bone marrow match test results that were done on Nate, Ethan and myself. Hopefully we will have a match.
Zack is such a happy baby...he loves to smile and he can "talk" your ear off :) He finds everything that big brother Ethan does amusing.
As things happen I will keep you updated. Until then, you are all in our thoughts and prayers.
Love,
Beth, Nathan, Ethan & Zack
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