As I posted yesterday we got discharged from Children's because the doctors did not think that he had Kawasaki's disease, however; they wanted us to keep watching him. Yesterday he woke up from his nap "sick" again with another fever and not feeling well. We gave him Tylenol and he took another nap before dinner and then ate a big dinner had a bath and went back to bed and slept 12 hours. He woke up not feeling well, but perked up a little later in the morning and never did have a fever at all. We then had a follow up this morning with the pediatrician and he was doing well and seemed in good spirits. He even told me that he wanted to go back to the Hospital so he could watch TV in bed and eat bacon! What a funny boy! I told the doctor I wouldn't believe that he was well until he woke up from a nap without a fever. She did hear some rattling in his lungs so we got an X-ray which turned out negative for pneumonia. She wasn't sure what to think but said to call if he had a temperature when he woke up from his nap.
Sadly, he woke up with a 102.5 temperature again today. Which makes day 5 of waking up with a temp over 101, and day 9 with waking up with a temperature at all! I called his the doctor that we saw today and she has phone calls in to Cardiology and infectious disease at Children's and is waiting to hear back regarding their recommendations.
At this point I am getting a little concerned for him. it seems like a long time to be sick and have a fever. Please be praying that we get to the bottom of this or that it just resolves (if it truly is a virus that is still running it's course)very quickly! I just wanted to send out an update so people know to still be praying for him. I hope it's nothing at all! Thanks!
Friday, October 3, 2014
Thursday, October 2, 2014
Thanks for praying
Eli and I are home now. It turned out this morning that the medical team thought that Eli's symptoms did not add up to Kawasaki's disease at this time. Based on all of the lab work they did, they are assuming that he just has a virus and it just needs to run its course. Sadly for Eli, viruses hit Eli harder than they do most kids so whenever he gets anything he usually ends up at Childrens for one reason or another, never the ER though! We do have a follow up with the pediatrician tomorrow morning to make sure things are still going well.
He was a tired boy and fell asleep on the way home. I am hoping he will sleep all afternoon and feels better when he wakes up. Thank you for all of your prayer! I truly believe that it helped him turn the corner. I'll update again if there is anything else significant to pray for. For now, he just needs to rest and his body needs to heal! So keep praying for that.
He was a tired boy and fell asleep on the way home. I am hoping he will sleep all afternoon and feels better when he wakes up. Thank you for all of your prayer! I truly believe that it helped him turn the corner. I'll update again if there is anything else significant to pray for. For now, he just needs to rest and his body needs to heal! So keep praying for that.
What's up with E?
As many of you probably saw on Facebook last night we ended up in the ER at Seattle Children's yesterday with Eli. Thanks for your prayers! I wanted to give you all a better update so you won't be freaking out.
Well Eli started with a low grade fever at the end of last week that would come and go. He acted fine and when I asked him if he felt sick or if anything hurt, he'd reply "No, I feel fine" with a look of "you're crazy mom" on his face and continue playing. Well come Monday his fever got worse and he started acting like he didn't feel well and had some sniffles. I just figured he'd gotten a cold or the flu, and it would just run it's corse. Well after 3 days of higher fever and more miserable boy I thought that 6 days was a long time to have a fever, so I called the pediatrician last night and got him right in (I love that our pediatrician's office have weird hours and can generally squeeze kids in anytime!!).
The doctor that saw him didn't really know what to think and kind of, sort of, thought he MIGHT have a disease called Kawasaki's disease. This is a disease that affects the heart and the blood vessels. Given Eli's heart history (which those of you who are unfamiliar can learn more about in this blog if you're interested!) she didn't want to take any chances. So she referred us down to Children's ER where his cardiology team is located.
Well after several tests last night, they concluded that he didn't have strep... And that's about it! After they ruled out strep they took some blood and other samples and ran some labs. They are not sure that he has Kawasaki's disease as he only has 2 out of the 4 symptoms needed for diagnosis. But they did find out that his inflammation was quite high, so that was a bit concerning. The cardiology team still wants to do an Echo on him this morning to continue to rule out Kawasaki's disease. So we will do that later (when he wakes up, we didn't get to bed till midnight last night!!).
I will post more as I know more. For now we are just chillin on the floor (we moved out of ER last night) until Eli's temp is gone without meds. Prayers are appreciated that he kicks this thing fast and we can get out of this joint!! Last night the boys did have fun watching Frozen, so that was special for them since we don't tend to watch movies on school nights!
Well Eli started with a low grade fever at the end of last week that would come and go. He acted fine and when I asked him if he felt sick or if anything hurt, he'd reply "No, I feel fine" with a look of "you're crazy mom" on his face and continue playing. Well come Monday his fever got worse and he started acting like he didn't feel well and had some sniffles. I just figured he'd gotten a cold or the flu, and it would just run it's corse. Well after 3 days of higher fever and more miserable boy I thought that 6 days was a long time to have a fever, so I called the pediatrician last night and got him right in (I love that our pediatrician's office have weird hours and can generally squeeze kids in anytime!!).
The doctor that saw him didn't really know what to think and kind of, sort of, thought he MIGHT have a disease called Kawasaki's disease. This is a disease that affects the heart and the blood vessels. Given Eli's heart history (which those of you who are unfamiliar can learn more about in this blog if you're interested!) she didn't want to take any chances. So she referred us down to Children's ER where his cardiology team is located.
Well after several tests last night, they concluded that he didn't have strep... And that's about it! After they ruled out strep they took some blood and other samples and ran some labs. They are not sure that he has Kawasaki's disease as he only has 2 out of the 4 symptoms needed for diagnosis. But they did find out that his inflammation was quite high, so that was a bit concerning. The cardiology team still wants to do an Echo on him this morning to continue to rule out Kawasaki's disease. So we will do that later (when he wakes up, we didn't get to bed till midnight last night!!).
I will post more as I know more. For now we are just chillin on the floor (we moved out of ER last night) until Eli's temp is gone without meds. Prayers are appreciated that he kicks this thing fast and we can get out of this joint!! Last night the boys did have fun watching Frozen, so that was special for them since we don't tend to watch movies on school nights!
Thursday, February 20, 2014
Eli is 3!
Oh my goodness I really just can't believe it at all! The last 6 months have been such a time of growth for Eli. As many of you remember, last year at this time Eli was barely walking, only said about 3 words and I was worried about his health because he had been sick for over a month. Well this birthday month could not be any different!
Eli just had his exit testing from the birth to three program he was in. He did not qualify for ANY preschool services. He scored low normal for gross and fine motor, but not enough to qualify for services any more. He can get around with all the other kids his age. He's a bit slower and still has trouble maneuvering stairs, but he is working on it and wants to do it "all by my lelf (self) every time now. We are going to continue working on motor activities at home and I hope to continue to see improvements. He scored low in articulation, but still not enough to qualify (and a caveat on his articulation testing, we did it in November and he barely didn't qualify, he was really low. However, his therapist said that if we had done the testing at the beginning of February, there would have been no way he would have qualified! That's how fast he has been improving). His overall language (expressive and receptive language) he scored at about as 5-6 year old level! What the heck!! Where did this kid come from?!?!? I was floored. So was his speech therapist. When she started coming, when he was just 2, he had 3 words and we were working on him signing "more" with a rounded "oo" sound! Now the boy speaks in 6-8 word sentences and is becoming more and more intelligible everyday. And oh my he has A LOT to say! He talks and talks and talks. I always knew he would be a talker, and boy was I right! Caleb always says, "Eli is just a little Richard Sherman...he likes to talk!!" Poor Ryan, he's surrounded by talkers.
Eli's health this winter has also been stellar. He had a bit of a persistent cough after a cold last month but I got him a new inaihler and face mask, and he's been good to go after one dose! This is the first winter that he hasn't had some major illness/set back! (So Cassie, if you read this, there is hope for Bruce next year!) As for his heart and his vision, I have no concerns right now. He does have a cardiology appointment next Wednesday and if there is any concern, I will keep you all posted. And he has an eye doctor appointment in March. Again if there is any change to his vision status I will post an update too. But overall he's pretty healthy. His doctor told me at his three year check up that if I felt concerned about his development he could refer us to private therapy... then he heard Eli talk and said "never mind!"
Eli's little personality is also coming out more and more everyday! I fear that he is going to be the class clown when he is older. He LOVES to make people laugh and can tell jokes and understand jokes even better than Caleb at times. He cracks us up daily and has the best sense of humor. However, as I said he LOVES to make people laugh and can be disruptive at times too. He is also at the age of pushing the envelop and is constantly trying to see what he can get away with. Consequences do not seem to work on him very well either, so that's fun. He just doesn't care when he gets into trouble. I am still experimenting on what works, and I think loosing a "friend" (stuffed animal du jour) or "guk" (truck/car du jour) seems to do the trick! The boy has a stubborn streak to match mine...hmmm I wonder if our beginnings have anything to do with that. And if I didn't love him so much I would want to send him back at least once a day!! He also has a set of lungs on him and may have damaged a few people's hearing. When he doesn't get his way, or falls down, or hurts himself, or he drops something, or some other child touches him, gets too close or looks at him wrong... or really any tiny thing makes him upset, the WHOLE world will know about it. I call it his dramatic flair, he's always had it... I hope he learns to tone it down.
The other thing that Eli loves right now is music. He loves to drum, like Caleb did and play on the keyboard. If music comes on, he has to stop everything and listen to it. The other day I turned on the Les Miserables sound track and he started humming the opening to it for days! It was amazing to me that he heard it once and got the tune down. Granted most of his "humming" sounds like heavy metal screaming, but he does still carry a tune.
All in all we love our little Eli. He is such a sweet heart and loves to give snuggles and loves. I can't believe how far he has come and I couldn't be more proud of the boy he is turning into.
Thursday, June 20, 2013
Summer is Starting
I wanted to post a quick Eli update. His last post had so many things going on! Well, luckily since then Eli has been very healthy.
He had a follow up cardiology appointment 2 weeks ago and everything came back normal. She gave him a clean bill of health and we can resume our yearly check ups again. That took a weight off my shoulders.
He also had his eye follow up a few weeks ago and again his doctor thought his eyes were looking good. He has a slight bit of crossing still for things that are close up, but not enough for her to want to do anything. So he has been patch and glasses free for the past 6 months and it's been great! We do have another appointment in the beginning of September to recheck everything.
He has continued with his weekly speech and occupational therapy and has made great improvments. He has started "running" and "jumping" (not well, but he is trying) and can get around anywhere he wants to go. He has also started doing somersaults and loves to wrestle and climb on things. So his gross motor is coming along and developing. His language is also greatly improved. He went into his 2 birthday with about 3 spoken words (mama, dada, and baba) and about 3 signs. He would only use those words when prompted to use them. Now he has about 50 words and is using them without prompting and is even combining them into two word phrases! It is wonderful to see such fast growth in him. His therapists are impressed too.
Well, I hope everyone is doing well. I just wanted to update on Eli since he is so different from my last post! Thanks for all of the prayers.
He had a follow up cardiology appointment 2 weeks ago and everything came back normal. She gave him a clean bill of health and we can resume our yearly check ups again. That took a weight off my shoulders.
He also had his eye follow up a few weeks ago and again his doctor thought his eyes were looking good. He has a slight bit of crossing still for things that are close up, but not enough for her to want to do anything. So he has been patch and glasses free for the past 6 months and it's been great! We do have another appointment in the beginning of September to recheck everything.
He has continued with his weekly speech and occupational therapy and has made great improvments. He has started "running" and "jumping" (not well, but he is trying) and can get around anywhere he wants to go. He has also started doing somersaults and loves to wrestle and climb on things. So his gross motor is coming along and developing. His language is also greatly improved. He went into his 2 birthday with about 3 spoken words (mama, dada, and baba) and about 3 signs. He would only use those words when prompted to use them. Now he has about 50 words and is using them without prompting and is even combining them into two word phrases! It is wonderful to see such fast growth in him. His therapists are impressed too.
Well, I hope everyone is doing well. I just wanted to update on Eli since he is so different from my last post! Thanks for all of the prayers.
Wednesday, March 6, 2013
2 years old!
I know it's a little late (about a month) to be posting his 2 year post. However, he has had a few appointments this past month that I thought I would wait for to add to this.
Eli is doing well. He has had quite the year. My last post (9 months ago!) stated that Eli was having health concerns beyond his development. We had an EEG done to check for seizures. That came back normal, and we have actually had no other concerns in that area. I think he was getting bored when he wasn't mobile and would just space out. As soon as he started crawling and then walking I never noticed that behavior again. The other concern I had was his chronic ear infections. I took him to an ENT at Children's, did not have a good experience with the doctor he saw (He didn't want to test his hearing! What?!?!?! I'm sorry, you don't tell an Audiologist who's child has chronic ear infections that you are not going to test his hearing!!! That is NOT going to go over well). So, I ended up arguing with him until he agreed to a hearing test. Which showed that he was hearing normally in at least the better ear. I felt really uncomfortable with going ahead with surgery after that. So I decided to try taking him off dairy for a month and see what happened. Well, that worked, he has cleared right up and has not had another ear infection since! He also has not had any milk or yogurt either. We have added some cheese back in and that has seemed to not affect his ears at all (which is helpful for a picky 2 year old's diet). So those two concerns have not been much of a concern anymore which is great.
We have also continued to have his eyes checked after his eye surgery last March. Sadly after that surgery his eyes started crossing again, so we had to start patching again. Then in September he got a cute pair of little glasses!
He wore those for a few months and then Dr. Haidar decided that it was time to do another surgery to correct the crossing that had come back. In December, right after Christmas he went back to Swedish to have another eye surgery. That went well again, and his eyes have looked even better since. I notice some crossing occasionally but at his 6 week check earlier in February Dr. Haidar thought he looked great. He doesn't have to have anything special done to his eyes for now (No patching or glasses for the time being). She is going to see him again in April or May (I can't remember which for another follow up). We are so thankful that his eyes are doing better, and we don't have to suffer though patching/glasses torture for now!
His last follow up appointment was his annual cardiology appointment, that he had today. His echocardiogram showed a little different blood flow than last year and a slightly constricted vein on the left side and Dr. Vernon was a bit concerned. However, when she talked to me about it and found out that he has had a really bad cough (possibly pneumonia) this past week and has been really sick, she actually felt better about it. Especially when she listened to his lungs and found that the rasping was coming from the location of the constricted vein. She did an X-ray to verify if that's what was going on. I should hear back from her later today with the results. We also have another follow up in 3 months to make sure that everything corrects itself. I am not going to get worked up about it for now, as it may just go away. However, "abnormal" or a "change" always freaks me out a bit. And prayers are always appreciated!
Another development is that he has been so sick the past week. His temperature was 103ish all weekend. Ryan ended up taking him into the pediatrician on Sunday morning and got some antibiotics for his "possible pneumonia". Poor kid. He is getting a bit better everyday, but is still not 100% at all. He also has stopped eating. So much so that he weighed less today than his last Children's appointment in the summer and it freaked Dr. Vernon out that she called his pediatrician and it freaked him out too. So now we have to watch his weight. He has dropped almost a Kilo since Sunday!!! So prayers that he will get a huge appetite back and can make up some ground. The tiny peanut cannot afford to loose any weight at all!!!
The other on going issue with Eli is his development. He is still delayed and still getting OT (occupational therapy) weekly and now SLP (Speech pathology) services twice a month. He has made really good gross motor gains since Katie (OT) started coming out every week. He started crawling and walking last summer. He now gets around just fine all over the house with Caleb, and the two are thick as thieves! He can go up and down the stairs as he needs and has learned how to be safe with that. We have now switched our focus more to speech. He has a few words and a few signs, but doesn't tend to use them unless prompted. But he is gaining ground slowly but surely. I think having Katie (SLP) coming now will give me some extra help on how to focus on his language growth. I know quite a bit, but I am no SLP, so I think it will help.
Other than that Eli is doing great! He is such a funny little dude with a very strong personality and opinions. Which I think God blessed him with because he needed it!!! We love him so much and are so proud of the gains he has made through all of the challenges that he has faced in his short 2 years!
Eli is doing well. He has had quite the year. My last post (9 months ago!) stated that Eli was having health concerns beyond his development. We had an EEG done to check for seizures. That came back normal, and we have actually had no other concerns in that area. I think he was getting bored when he wasn't mobile and would just space out. As soon as he started crawling and then walking I never noticed that behavior again. The other concern I had was his chronic ear infections. I took him to an ENT at Children's, did not have a good experience with the doctor he saw (He didn't want to test his hearing! What?!?!?! I'm sorry, you don't tell an Audiologist who's child has chronic ear infections that you are not going to test his hearing!!! That is NOT going to go over well). So, I ended up arguing with him until he agreed to a hearing test. Which showed that he was hearing normally in at least the better ear. I felt really uncomfortable with going ahead with surgery after that. So I decided to try taking him off dairy for a month and see what happened. Well, that worked, he has cleared right up and has not had another ear infection since! He also has not had any milk or yogurt either. We have added some cheese back in and that has seemed to not affect his ears at all (which is helpful for a picky 2 year old's diet). So those two concerns have not been much of a concern anymore which is great.
We have also continued to have his eyes checked after his eye surgery last March. Sadly after that surgery his eyes started crossing again, so we had to start patching again. Then in September he got a cute pair of little glasses!
He wore those for a few months and then Dr. Haidar decided that it was time to do another surgery to correct the crossing that had come back. In December, right after Christmas he went back to Swedish to have another eye surgery. That went well again, and his eyes have looked even better since. I notice some crossing occasionally but at his 6 week check earlier in February Dr. Haidar thought he looked great. He doesn't have to have anything special done to his eyes for now (No patching or glasses for the time being). She is going to see him again in April or May (I can't remember which for another follow up). We are so thankful that his eyes are doing better, and we don't have to suffer though patching/glasses torture for now!
His last follow up appointment was his annual cardiology appointment, that he had today. His echocardiogram showed a little different blood flow than last year and a slightly constricted vein on the left side and Dr. Vernon was a bit concerned. However, when she talked to me about it and found out that he has had a really bad cough (possibly pneumonia) this past week and has been really sick, she actually felt better about it. Especially when she listened to his lungs and found that the rasping was coming from the location of the constricted vein. She did an X-ray to verify if that's what was going on. I should hear back from her later today with the results. We also have another follow up in 3 months to make sure that everything corrects itself. I am not going to get worked up about it for now, as it may just go away. However, "abnormal" or a "change" always freaks me out a bit. And prayers are always appreciated!
Another development is that he has been so sick the past week. His temperature was 103ish all weekend. Ryan ended up taking him into the pediatrician on Sunday morning and got some antibiotics for his "possible pneumonia". Poor kid. He is getting a bit better everyday, but is still not 100% at all. He also has stopped eating. So much so that he weighed less today than his last Children's appointment in the summer and it freaked Dr. Vernon out that she called his pediatrician and it freaked him out too. So now we have to watch his weight. He has dropped almost a Kilo since Sunday!!! So prayers that he will get a huge appetite back and can make up some ground. The tiny peanut cannot afford to loose any weight at all!!!
The other on going issue with Eli is his development. He is still delayed and still getting OT (occupational therapy) weekly and now SLP (Speech pathology) services twice a month. He has made really good gross motor gains since Katie (OT) started coming out every week. He started crawling and walking last summer. He now gets around just fine all over the house with Caleb, and the two are thick as thieves! He can go up and down the stairs as he needs and has learned how to be safe with that. We have now switched our focus more to speech. He has a few words and a few signs, but doesn't tend to use them unless prompted. But he is gaining ground slowly but surely. I think having Katie (SLP) coming now will give me some extra help on how to focus on his language growth. I know quite a bit, but I am no SLP, so I think it will help.
Other than that Eli is doing great! He is such a funny little dude with a very strong personality and opinions. Which I think God blessed him with because he needed it!!! We love him so much and are so proud of the gains he has made through all of the challenges that he has faced in his short 2 years!
Monday, June 18, 2012
16 months old now, where has the time gone?
My tiny baby is really growing up, I just can't believe it. Eli continues to make good improvements in his development since the last time I posted. He is crawling all around like a champ now. It's funny because before he only wanted to hold our hands and walk around. Now he realizes that crawling is easier and he can do it without help, so he is not as motivated to walk anymore! Funny boy. We have moved on to working on strengthening his right side, which is the side he doesn't tend to use as much. Also, we are working on him pulling himself up on furniture and crawling up stairs.
Feeding is going better as well. I finally found some cups that seem to work for him... take and toss cups! I have had them since Caleb was his age. But I spent tons of money on all these other cups, only to find out the ones I had all along, work the best for him! Silly boy and silly mommy.
Even though Eli's development seems to be coming along, there have been some other health concerns that we are looking into right now. We have been wondering for awhile if he is possibly having seizures sometimes. Not the Grand Mal, type that you automatically think of. Just ones where he spaces out for a few seconds and then comes back into whatever he's doing. So we had a doctors appointment last week, and his pediatrician thought it might be a possibility given my description. So we have an appointment with the Children's Hospital Neurology Seizure clinic tomorrow morning. Then he has an EEG scheduled for next week. So we will see if there is something going on or not. I am not sure what to think, sometimes I think he is fine, other times I wonder so I would rather just rule it out.
Eli has also been having lots of ear infections, and if he doesn't have an ear infection, he still has fluid behind his ear drum. So we also have an appointment at Children's for ENT/Audiology next week as well. This appointment is more concerning to me, because I KNOW he has trouble with his ears, so its more of a what course of action are we going to take to clear this up. It might also just be an area of great sensitivity to me given my profession. But we will see what goes down at that appointment!
Over all, things are going well in our household. We are excited for the summer to hurry up and get here so we can go play outside! We have a few vacations planned for the summer, sticking close to home. So we are excited about that too. We are also planning on replacing our roof this summer so if anyone has any knowledge or expertise with that type of thing and wants to help us out, we would love it!!! Just let us know!
Feeding is going better as well. I finally found some cups that seem to work for him... take and toss cups! I have had them since Caleb was his age. But I spent tons of money on all these other cups, only to find out the ones I had all along, work the best for him! Silly boy and silly mommy.
Even though Eli's development seems to be coming along, there have been some other health concerns that we are looking into right now. We have been wondering for awhile if he is possibly having seizures sometimes. Not the Grand Mal, type that you automatically think of. Just ones where he spaces out for a few seconds and then comes back into whatever he's doing. So we had a doctors appointment last week, and his pediatrician thought it might be a possibility given my description. So we have an appointment with the Children's Hospital Neurology Seizure clinic tomorrow morning. Then he has an EEG scheduled for next week. So we will see if there is something going on or not. I am not sure what to think, sometimes I think he is fine, other times I wonder so I would rather just rule it out.
Eli has also been having lots of ear infections, and if he doesn't have an ear infection, he still has fluid behind his ear drum. So we also have an appointment at Children's for ENT/Audiology next week as well. This appointment is more concerning to me, because I KNOW he has trouble with his ears, so its more of a what course of action are we going to take to clear this up. It might also just be an area of great sensitivity to me given my profession. But we will see what goes down at that appointment!
Over all, things are going well in our household. We are excited for the summer to hurry up and get here so we can go play outside! We have a few vacations planned for the summer, sticking close to home. So we are excited about that too. We are also planning on replacing our roof this summer so if anyone has any knowledge or expertise with that type of thing and wants to help us out, we would love it!!! Just let us know!
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