Sunday, February 27, 2011
sounds of joy!
Jackson has an official "I like this" sound! I know this because our family attended a birthday party at the Children's Museum in Decatur, IL. Jackson kept going "ooh" and "aah" in very loud, happy tones! We were in the bubble room, creating very large bubbles, and Jackson just continued and continued to make these happy sounds. I was so happy to hear this, and to see the smiles, I had tears in my eyes.
Friday, February 25, 2011
the follow-up
So I took Jack to the pediatrician Thursday afternoon. The appointment was a follow-up from when Jackson was diagnosed with a double ear infection.
Ugh...
Let's start with Jack's weight. in January, Jack weighed in at 19lb 12oz. 11 days ago Jack weighed in at 19lb 6oz. Yesterday, Jack weighed in at 19lb 2oz. WHAT?!!!
I knew he was looking thinner, but my gosh. It probably doesn't help that he's been vomiting quite often. We also have to consider that Jack was getting 120 kcal/kg up until December and then was dropped down to 105 kcal/kg because his weight was still going up. Well. . .not anymore. One goal is to increase Jackson's feeds to a total of 120 kcal/kg again.Today will be the first official day of this attempt. No more feeding Jackson a short bolus over 30 minutes with the pump, four times a day. Now we're starting at a bolus over 1 hour with the pump, four times a day, plus the 8 hour feed over night. Jack can tolerate the hour long feeds so far. I'd like to get him back to a 30 minutes schedule. Maybe I can work towards that. My biggest fear is that I'm going to rush to much and try to feed Jackson to much formula too fast. I also am not a fan of waking up to the pump around 4am, every morning, just to turn it off. Jackson has been sleeping much better, which means I have been sleeping much better. :(
Jackson's ears: his right eardrum ruptured. There was dried blood in his ear canal. This explains the crusty stuff I found in his ear around the beginning of the week. Jack's left ear is still infected. The poor guy had to get two shots of Rocephin and must start another 10 days of the Cefdiner today. We go back on March 8th to see if everything cleared up.
I'm still concerned because Jack isn't acting any different with ear infections. . .what bothers him so much?
Ugh...
Let's start with Jack's weight. in January, Jack weighed in at 19lb 12oz. 11 days ago Jack weighed in at 19lb 6oz. Yesterday, Jack weighed in at 19lb 2oz. WHAT?!!!
I knew he was looking thinner, but my gosh. It probably doesn't help that he's been vomiting quite often. We also have to consider that Jack was getting 120 kcal/kg up until December and then was dropped down to 105 kcal/kg because his weight was still going up. Well. . .not anymore. One goal is to increase Jackson's feeds to a total of 120 kcal/kg again.Today will be the first official day of this attempt. No more feeding Jackson a short bolus over 30 minutes with the pump, four times a day. Now we're starting at a bolus over 1 hour with the pump, four times a day, plus the 8 hour feed over night. Jack can tolerate the hour long feeds so far. I'd like to get him back to a 30 minutes schedule. Maybe I can work towards that. My biggest fear is that I'm going to rush to much and try to feed Jackson to much formula too fast. I also am not a fan of waking up to the pump around 4am, every morning, just to turn it off. Jackson has been sleeping much better, which means I have been sleeping much better. :(
Jackson's ears: his right eardrum ruptured. There was dried blood in his ear canal. This explains the crusty stuff I found in his ear around the beginning of the week. Jack's left ear is still infected. The poor guy had to get two shots of Rocephin and must start another 10 days of the Cefdiner today. We go back on March 8th to see if everything cleared up.
I'm still concerned because Jack isn't acting any different with ear infections. . .what bothers him so much?
Sunday, February 20, 2011
and it happened again. . .and again.
I wanted to share news that Jason and I have been trying to decide if we need to take Jackson to the ER.
Let me back up. Jack woke up Saturday morning vomiting a small bit (I know. . .again?!). He ended up vomiting 4 times total. My description, not like I want to disgust everyone, but I've written about much worse, is to take a 4oz bottle and dump it on a towel, or on the carpet. That's how much Jack has lost each time. Sometimes more, sometimes less, but usually so much it's pouring off the burp cloth, receiving blanket, while we're trying to play 'catch'. It starts out with mucus, just like before. The reason why we haven't taken Jackson in: he's acting fine, other than still in pain from his ears, and tired. His diapers are still wet. He isn't vomiting every 20 minutes like in October and December. Today, Sunday, he vomited twice.
Let me back up some more. I took Evelyn to the doctor (for low fevers and coughing and sneezing for more than 2 weeks) on Thursday and Jack came with. He's got that double ear infection that was diagnosed on Monday and he started coughing a day or so later. Starting on Wednesday, Jackson's nose was pouring, literally pouring, mucus. We were told that Jack probably has RSV. That doesn't surprise me. The nurse practitioner (because Evelyn and Jackson's Pedi wasn't in all week) recommended that I give Jack breathing treatments if he's coughing. The breathing treatments seem to help but they also seemed to aid in more vomit. Doesn't make sense to me. . .but, I'm getting a little too specific here, Jack usually, when he's very very snotty, vomits thick mucus first, followed by the formula. With the breathing treatments, there isn't any mucus, just a TON of thin formula. GROSS. sorry.
If Jack starts showing any signs of dehydration I'll be sure to take him in. Otherwise, what am I supposed to do? Poke him for a blood draw just in case?
I ask you to pray for these CFC kids that are having difficult times: Abby (mass in front of brain between eyes and heart failure. Will require brain surgery but it is very risky); Danielle (still in the hospital for RSV, going on more than a month, prior hospitalizations for pneumonia and seizures); Colton (IVIG treatments that sometimes cause allergic seizures, prior hospitalizations for pneumonia. Sister has the flu and all family members are on Tamiflu); Jacob (many seizures each day, trying to find the right mix of medications to control the seizure activity); Mael (had brain surgery to aid in slowing down the seizure activity. Only 2 weeks after the surgery, in Holland, he is resting at home).
I also mention a baby girl with Noonan Syndrome who lost her battle today. She went into the OR for a g-tube placement a couple of days ago and her heart stopped.
And, Little Adam, Jackson's classmate and friend. Adam has Down Syndrome and is in the hospital with RSV and possible pneumonia. Adam had heart surgery when he was a baby.
And of course two family members who are in the hospital. And other family members who are sick. And for my getting back into a healthy eating groove. I'm eating WAY TO MUCH!
Let me back up. Jack woke up Saturday morning vomiting a small bit (I know. . .again?!). He ended up vomiting 4 times total. My description, not like I want to disgust everyone, but I've written about much worse, is to take a 4oz bottle and dump it on a towel, or on the carpet. That's how much Jack has lost each time. Sometimes more, sometimes less, but usually so much it's pouring off the burp cloth, receiving blanket, while we're trying to play 'catch'. It starts out with mucus, just like before. The reason why we haven't taken Jackson in: he's acting fine, other than still in pain from his ears, and tired. His diapers are still wet. He isn't vomiting every 20 minutes like in October and December. Today, Sunday, he vomited twice.
Let me back up some more. I took Evelyn to the doctor (for low fevers and coughing and sneezing for more than 2 weeks) on Thursday and Jack came with. He's got that double ear infection that was diagnosed on Monday and he started coughing a day or so later. Starting on Wednesday, Jackson's nose was pouring, literally pouring, mucus. We were told that Jack probably has RSV. That doesn't surprise me. The nurse practitioner (because Evelyn and Jackson's Pedi wasn't in all week) recommended that I give Jack breathing treatments if he's coughing. The breathing treatments seem to help but they also seemed to aid in more vomit. Doesn't make sense to me. . .but, I'm getting a little too specific here, Jack usually, when he's very very snotty, vomits thick mucus first, followed by the formula. With the breathing treatments, there isn't any mucus, just a TON of thin formula. GROSS. sorry.
If Jack starts showing any signs of dehydration I'll be sure to take him in. Otherwise, what am I supposed to do? Poke him for a blood draw just in case?
I ask you to pray for these CFC kids that are having difficult times: Abby (mass in front of brain between eyes and heart failure. Will require brain surgery but it is very risky); Danielle (still in the hospital for RSV, going on more than a month, prior hospitalizations for pneumonia and seizures); Colton (IVIG treatments that sometimes cause allergic seizures, prior hospitalizations for pneumonia. Sister has the flu and all family members are on Tamiflu); Jacob (many seizures each day, trying to find the right mix of medications to control the seizure activity); Mael (had brain surgery to aid in slowing down the seizure activity. Only 2 weeks after the surgery, in Holland, he is resting at home).
I also mention a baby girl with Noonan Syndrome who lost her battle today. She went into the OR for a g-tube placement a couple of days ago and her heart stopped.
And, Little Adam, Jackson's classmate and friend. Adam has Down Syndrome and is in the hospital with RSV and possible pneumonia. Adam had heart surgery when he was a baby.
And of course two family members who are in the hospital. And other family members who are sick. And for my getting back into a healthy eating groove. I'm eating WAY TO MUCH!
Wednesday, February 16, 2011
allergy test results
Hi there everyone out in cyber-world. Are you there?
Evelyn and I took Jackson to the Nutritionist yesterday. Jack hasn't really gained any weight since December but he was gotten longer. I'm supposed to try to get more formula into Jack by increasing the rate/hour and dose at night, and the rate/hour and dose during the day. I'm not really sure how we will accomplish this, but we'll be giving it a try. It might take a week or more to get Jack up to where he needs to be, if it still stays in his belly.
I had the Nutritionist pull up the Allergy Test results. According to the results, he was a 1 for Milk, and a 2 for Eggs. I don't really know how many levels there are, but I was told that a 1 usually means that it won't cause a problem, and a 2 means to do trials with different foods that contain that ingredient. Last night, I went online and attempts to do some research on the test that was performed. There are either 5 or 6 different levels. 6 obviously means that death can happen. There is also a false negative and false positive occurrence with the test.
I guess I'll be reading labels more.
Evelyn was a perfect little angel at the appointment. She always is. She brings a bag of Hot Wheel cars each time. She's such a good little girl. . .when we're out in public or when she's at school. It's a different story at home. I'll take it though.
Evelyn and I took Jackson to the Nutritionist yesterday. Jack hasn't really gained any weight since December but he was gotten longer. I'm supposed to try to get more formula into Jack by increasing the rate/hour and dose at night, and the rate/hour and dose during the day. I'm not really sure how we will accomplish this, but we'll be giving it a try. It might take a week or more to get Jack up to where he needs to be, if it still stays in his belly.
I had the Nutritionist pull up the Allergy Test results. According to the results, he was a 1 for Milk, and a 2 for Eggs. I don't really know how many levels there are, but I was told that a 1 usually means that it won't cause a problem, and a 2 means to do trials with different foods that contain that ingredient. Last night, I went online and attempts to do some research on the test that was performed. There are either 5 or 6 different levels. 6 obviously means that death can happen. There is also a false negative and false positive occurrence with the test.
I guess I'll be reading labels more.
Evelyn was a perfect little angel at the appointment. She always is. She brings a bag of Hot Wheel cars each time. She's such a good little girl. . .when we're out in public or when she's at school. It's a different story at home. I'll take it though.
Monday, February 14, 2011
quick update
I apologize ahead of time for this quick update. I'm tired and trying to share recent events before the likelihood of Jack screaming, again.
The Gastric Emptying Study came back normal.
We see the nutritionist tomorrow afternoon, Tuesday. Maybe she'll have the allergy test results.
Jack went to a pediatrician this morning.because he's been so sleepy. He's been very cuddly and sleepy for about 4 weeks., Jack has been taking naps, falling asleep in the car, falling asleep quickly in bed. . . Jack has a double ear infection with a mild fever. He is now on an antibiotic.
Timing worked out well because we just scheduled an appointment in March with an ENT.
The Gastric Emptying Study came back normal.
We see the nutritionist tomorrow afternoon, Tuesday. Maybe she'll have the allergy test results.
Jack went to a pediatrician this morning.because he's been so sleepy. He's been very cuddly and sleepy for about 4 weeks., Jack has been taking naps, falling asleep in the car, falling asleep quickly in bed. . . Jack has a double ear infection with a mild fever. He is now on an antibiotic.
Timing worked out well because we just scheduled an appointment in March with an ENT.
Thursday, February 10, 2011
Jackson's Doppelganger
I Know. . .Right?! Did you do a double take?
This is Arlo. He turned 2 in January. He doesn't have CFC Syndrome. Arlo has Noonan Syndrome, the original syndrome Jackson was tested for. I was looking back at some of Arlo's other pictures and I just can't believe the resemblance!
Sunday, February 6, 2011
update. . .lots of stuff. . .maybe
So I noticed that my last post was from January 23. Woops. Sorry about the delay. There has been a lot of stuff going on. This may end up being a list. I haven't decided yet.
Just to let you know, it is now approximately 30 hours later and I'm just getting back to the blog.
Jackson met his new GI Doctor at the end of January (my mother came to get Evelyn to and from school while I took Jack to the appointment, and also to keep me company while Jason was away on business). I really liked her. He was fairly calm during the visit. Odd. Jack will be having a Gastric Emptying Study on Wednesday, February 9th. I was surprised and happy, all at the same time, that this was going to occur. Finally, a Doctor who is willing to run more tests. She also gave me a stack of labs to have drawn (CBC, BMP, Vitamin A, Vitamin D, Vitamin E, Allergy). This portion. . .I wasn't thrilled. Jack had his blood drawn on Saturday, January 29. He was to have approx 26cc of blood drawn but the recommended amount is 1cc/lb. Jack is just under 20lbs. We planning on getting the 20cc and stopping. I was laying on a hospital bed with Jack directly next to me. He, of course, was crying and screaming. The first prick was in the back of Jack's right hand. The blood wasn't flowing (this is typical). They were able to get 2cc. The needle was removed and Jack's vein was blown. There was a large bulge where the needle was inserted. "ouch!" Jack was starting to choke on his saliva while on his back so I sat him up on my lap. He was still fussing and well, really. . .screaming. His left arm was held and a large vein was found. I wrapped one arm around Jack's torso and arms, and the other arm held Jack's head tight against my chest. The needle was inserted and the syringe was pulled. No blood. Again it was pulled. No blood. Oh!, a small amount. Wow! more blood! Quickly the syringe filled to 6cc. The nurses switched the syringe and got another 6cc. . .and then another! We were all cheering Jack on and whispering in his ear, "keep going Jack! Keep that blood flowing. Let's get this done. No more trouble then!" We stopped after the third syringe. 20cc was collected. The nurse told me that she wasn't sure if we got enough for the tests and she would call me to let me know if Jack would need to come back in a few days. The nurse shook my hand when we left. We were all proud that we were able to get something! Jack is such a hard bleeder when it comes to these draws. Within an hour, the nurse called and informed me that they had enough blood for the hospital lab. They would find out in a couple of weeks if the remainder of the labs, the allergy portion, was complete. The allergy labs had to be sent out.
Phew! My heart is pumping from sharing this story. Wow! That was a stressful event.
What else: Jack saw the eye doctor on Friday, February 4. Jackson had the best eye appointment yet. He was calm and smiling, as long as the Doctor stayed a very good distance away. Jack has to go back in 2 months to see a specialist, an orthoptist, because he has intermittent strabismus, and will probably need surgery to correct the muscle. Jack's right eye has been getting out of alignment more and more. It was very bad at the doctor.
We have a very busy couple of weeks. Jack goes to Springfield, IL (which is only a 50 minute drive) for Feeding Therapy on Monday 2/7, the Gastric Emptying Study 2/9, Nutritionist 2/15, and Feeding Therapy 2/21. I am completely fine with all of this. We're only driving for 50 miles, not 140. Simple trips.
This morning, while my parents were here (they visited over the weekend to help with Jack's appointment to St. Louis and getting Evelyn to and from school) Jack kept pointing to the door and signing "bye bye". We asked him what he wanted. He said, in words, "bah bah" (bye bye) !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Just to let you know, it is now approximately 30 hours later and I'm just getting back to the blog.
Jackson met his new GI Doctor at the end of January (my mother came to get Evelyn to and from school while I took Jack to the appointment, and also to keep me company while Jason was away on business). I really liked her. He was fairly calm during the visit. Odd. Jack will be having a Gastric Emptying Study on Wednesday, February 9th. I was surprised and happy, all at the same time, that this was going to occur. Finally, a Doctor who is willing to run more tests. She also gave me a stack of labs to have drawn (CBC, BMP, Vitamin A, Vitamin D, Vitamin E, Allergy). This portion. . .I wasn't thrilled. Jack had his blood drawn on Saturday, January 29. He was to have approx 26cc of blood drawn but the recommended amount is 1cc/lb. Jack is just under 20lbs. We planning on getting the 20cc and stopping. I was laying on a hospital bed with Jack directly next to me. He, of course, was crying and screaming. The first prick was in the back of Jack's right hand. The blood wasn't flowing (this is typical). They were able to get 2cc. The needle was removed and Jack's vein was blown. There was a large bulge where the needle was inserted. "ouch!" Jack was starting to choke on his saliva while on his back so I sat him up on my lap. He was still fussing and well, really. . .screaming. His left arm was held and a large vein was found. I wrapped one arm around Jack's torso and arms, and the other arm held Jack's head tight against my chest. The needle was inserted and the syringe was pulled. No blood. Again it was pulled. No blood. Oh!, a small amount. Wow! more blood! Quickly the syringe filled to 6cc. The nurses switched the syringe and got another 6cc. . .and then another! We were all cheering Jack on and whispering in his ear, "keep going Jack! Keep that blood flowing. Let's get this done. No more trouble then!" We stopped after the third syringe. 20cc was collected. The nurse told me that she wasn't sure if we got enough for the tests and she would call me to let me know if Jack would need to come back in a few days. The nurse shook my hand when we left. We were all proud that we were able to get something! Jack is such a hard bleeder when it comes to these draws. Within an hour, the nurse called and informed me that they had enough blood for the hospital lab. They would find out in a couple of weeks if the remainder of the labs, the allergy portion, was complete. The allergy labs had to be sent out.
Phew! My heart is pumping from sharing this story. Wow! That was a stressful event.
What else: Jack saw the eye doctor on Friday, February 4. Jackson had the best eye appointment yet. He was calm and smiling, as long as the Doctor stayed a very good distance away. Jack has to go back in 2 months to see a specialist, an orthoptist, because he has intermittent strabismus, and will probably need surgery to correct the muscle. Jack's right eye has been getting out of alignment more and more. It was very bad at the doctor.
We have a very busy couple of weeks. Jack goes to Springfield, IL (which is only a 50 minute drive) for Feeding Therapy on Monday 2/7, the Gastric Emptying Study 2/9, Nutritionist 2/15, and Feeding Therapy 2/21. I am completely fine with all of this. We're only driving for 50 miles, not 140. Simple trips.
This morning, while my parents were here (they visited over the weekend to help with Jack's appointment to St. Louis and getting Evelyn to and from school) Jack kept pointing to the door and signing "bye bye". We asked him what he wanted. He said, in words, "bah bah" (bye bye) !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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