The Good: Aiden is a hoot! He has the personality to fill a room. It seems that this young man can't go anywhere without adding another adoring fan to his list. He is a mover and a shaker. Nothing keeps him still for long. He thinks he has his own personal horse with our boxer, Maggie. She loves him so much that she always lets him sit on her, bounce on her and even take her bones. Now that's love! He is an eating machine...there is not much he won't eat. The one thing that is on top of his ICK list, much to the dismay of his daddy, is mashed potatoes. You can give him a bite and he scrapes them off his tongue. If you are up for some amusement...feed Aiden smashed taters.
Aiden now has TWO 16 year old siblings. He adores them like nobody's business. He loves to follow big brother, Brandon, around and rough house with him. Sister, Mikayla, can't seem to move from the room without a knee biting little shadow right behind. I love to hear "Aiden! NOOO! Get outta my room!" It is actually quite amusing. He knows which sibling he wants to pester too. Depending on who he wants to come out to play, he will lie tummy down outside their room and put his fingers under the door to get their attention. So clever!
The Bad: Aiden has made a return trip to the hospital. We have been here 7 days, as I write this. Once again it has started out as sniffles and ended up as pneumonia. He was admitted into the Pediatric Care Unit and we stayed there for 6 days.Then we were moved to the Peds unit. I am telling you it is like going from a Super 8 Motel to the Waldorf Astoria! Amazing!! It is the brand new Walt Disney Pavillion...oh my mom is impressed to say the least.
I actually went to power nap at the Ronald McDonald House a few hours here and there thanks to some friends who relieved me.That has been a life saver. You don't realize how important a hot shower and a bed to stretch out on can be....WOW!is all I can say.(Save those pop tabs for RMH...it is such a great cause and easy to do!!) I refuse to leave him alone unless there is no other option. Going down to the cafeteria is 1 thing, but hours upon hours is another story. Poor kid has so many strangers in and out of his room, he needs the comfort of a friendly face.
Now for the UGLY: A big factor with all of Aiden's pneumonias is that he has reflux and is aspirating when he drinks liquids. The aspiration is putting fluid in his lungs when he drinks and the reflux is putting fluid in his lungs after he drinks...a losing battle. To help with this he is to now drink liquids that we have to thicken with a special ingredient. It has the consistancy of fruit nectar. (side note..trying to explain fruit nectar to daddy was really funny. Since Daddy doesn't touch many fruits or drink many juices besides orange, he had to compare it to syrup. That's what he gets for having a limited palette!HA!)
So right now Aiden is going to have an endoscopy tomorrow to help figure out what the next steps are to follow to prevent further infections and to help preserve his lungs as much as possible. We have been asking ourselves...Should this have been caught earlier?? The answer seems to be..Possibly, but how the speach therapist explained it to me (and it makes sense) is that Aiden is very much atypical. (DUH we could have told you that HA!). He doesn't fit the symptoms for a kiddo with reflux and/or aspiration. Many of them are failure to thrive and lose weight or refuse to eat..that is not the case with our chunky monkey. So it is what it is, at this point.
THE UGLIEST: Poor baby has horrible horrible..did I mention HORRIBLE veins. Whenever he gets an iv line it blows. But the hardest part is actually getting an iv started. The ER nurse who has been here 20 years stated that there is only 3 kids he couldn't stick and Aiden is 1 of them. He was a very buff guy and I believe the term "freakishly strong" is how he referred to our little monkey. There are 2 people in this hospital that have had luck with him. Of course his line blew today and neither one of them are around to put the iv back in. Poor baby has been stuck about 12 times trying to get lines started. It is a little much on me watching..I can only imagine experiencing it. The poor guy.
I will let you know the next steps when we know them. God bless and remember....
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. (Isaiah 41:10)
Wednesday, June 15, 2011
Wednesday, April 27, 2011
Feb- Mar 2011
It's funny. I said in my last blog that Aiden never gets just the sniffles. Well sure enough on Feb 25 we ended up the hospital with the flu/pneumonia for a few days. He was on "lockdown" so to speak and it was hard for him to be couped up. He is such an active little fella. Both sets of grandparents will definitely agree to that! He wears them out :)
After we were released from the hospital we continued with the regiment of breathing treatments, steroids, and antibiotics. Then low and behold 4 weeks later we were right back in the hospital with pneumonia! For having pneumonia, he was much happier this time, he was able to be out of his room and play. He was a big hit with his nurses. I believe mom has competition with his nurse, Miss Elizabeth...he likes her a lot! He is already starting to break hearts :)
In between those 2 hospital stays, we ventured up Jacksonville to the Nemours clinic for his sedated ABR (hearing test)on March 18th. The deal with the sedated ABR was that Aiden was suppose to be "perfectly" healthy. HA! The words perfectly healthy and Aiden are rarely in the same breath, let alone in the same sentence. Mommy and Daddy had to fight for Aiden to be tested. Aiden was starting to come down with the "crud." The anesthesiologist didn"t want to risk sedating him. However, after we were able to convince them for a non-sedated approach. We gave Aiden a little dose of orange nastiness. The nurse said in 20 minutes he will be actng as if he is drunk. Well, 5 minutes after the dose he was out cold. After a short amount of time, the ENT and audiologist emereged with the results. He is not severely/profound as we once thought. He is profoundly deaf in both ears. To me, severely/profound sounds worse than just profound. But that is not the case in terms of deafness. As far as levels go, profound is the most loss of hearing.
Aiden's outer nerve hairs are decent. His inner nerve hairs are damaged. So the ENT thinks cochlear implants will help. We still need to meet with the cochlear implant audiologist for the last step in the process.
Thank you for your continued care, concern and prayers for Aiden and our family. God Bless!
After we were released from the hospital we continued with the regiment of breathing treatments, steroids, and antibiotics. Then low and behold 4 weeks later we were right back in the hospital with pneumonia! For having pneumonia, he was much happier this time, he was able to be out of his room and play. He was a big hit with his nurses. I believe mom has competition with his nurse, Miss Elizabeth...he likes her a lot! He is already starting to break hearts :)
In between those 2 hospital stays, we ventured up Jacksonville to the Nemours clinic for his sedated ABR (hearing test)on March 18th. The deal with the sedated ABR was that Aiden was suppose to be "perfectly" healthy. HA! The words perfectly healthy and Aiden are rarely in the same breath, let alone in the same sentence. Mommy and Daddy had to fight for Aiden to be tested. Aiden was starting to come down with the "crud." The anesthesiologist didn"t want to risk sedating him. However, after we were able to convince them for a non-sedated approach. We gave Aiden a little dose of orange nastiness. The nurse said in 20 minutes he will be actng as if he is drunk. Well, 5 minutes after the dose he was out cold. After a short amount of time, the ENT and audiologist emereged with the results. He is not severely/profound as we once thought. He is profoundly deaf in both ears. To me, severely/profound sounds worse than just profound. But that is not the case in terms of deafness. As far as levels go, profound is the most loss of hearing.
Aiden's outer nerve hairs are decent. His inner nerve hairs are damaged. So the ENT thinks cochlear implants will help. We still need to meet with the cochlear implant audiologist for the last step in the process.
Thank you for your continued care, concern and prayers for Aiden and our family. God Bless!
Friday, February 4, 2011
Catching up..2/4/11
Apologies to anyone that checks in to see updated news about Aiden. Life seems to have taken control since Aiden's birthday and it has been wild to say the least. Aiden is currently weighing in about just about 19 pounds. He seems to be right on target for weight gain. He is also just about my knee height, about 26 3/4 inches. So a true knee biter :) He is all smiles, even when he is not feeling well, and quite the charmer and flirt. Mikayla calls him a "momma's boy" and it does seem to fit. I can say I love being the only one he has eyes for even when others are in the room. The downfall to that bit of sweetness comes when he doesn't let me out of his sight without cries and fits - all short lived (most of the time).
Aiden has started a different daycare. Daddy is trying to take off some of the pressure from me, running high schoolers here and there. This daycare is also 10 minutes from his pediatrician. Unfortunately, this is a much needed convenience. Nevertheless, the people at the new daycare center, did not take a long time to fall in love, but I could have told you that.
Since October, when Aiden had RSV, the Flu and Pneumonia, we have combatted a lot of upper respitory infections. We did have a stretch of 3 weeks that we did not visit our pediatrician! That is a big deal in our house! The pulmonolgist decided last week to try some new medicenes, because he doesn't seem to just get the sniffles. The slightest cold turns into an UBER upper respitory infection. She was concerned and even mentioned that he seems to be following the trend towards the dreaded "A" word - asthma. Keeping our fingers crossed that this new medicene regiment will do the trick (a least for awhile).
Aiden's world is going mobile :) or he is rather. He started off with 4 steps, and after that didn't take 1 for about 10 days. Then one evening it clicked. I came home from school and the muffin head was on the move. With lots of encouragement and fun from Daddy and Brandon, Aiden was zooming across the living room floor. Zooming might be an exageration, but for a 1 year old...zooming works for me. He has been walking, tottering, and wreaking havoc on 2 feet for a good solid 5 days. Daddy even has him walking to the truck to go bye bye :) I thought my life was busy before...it was just getting warmed up!
The last bit to share for now is about his hearing. The Ear, Nose and Throat doc is walking us through the process for cochlear implants. We have to have a sedated CT (next week) to see if the ear structure supports the implants, then we must also have a sedated ABR (hearing test). These are the preliminary steps we must go through to find out if he is a canidate for the implants. This doctor would have liked to have seen Aiden with implants by 12 months. He is now 14 1/2 months. He is trying to fast forward a normally 6 month process into 3. We will keep you posted about the next Adventures of Aiden. God Bless!
Aiden has started a different daycare. Daddy is trying to take off some of the pressure from me, running high schoolers here and there. This daycare is also 10 minutes from his pediatrician. Unfortunately, this is a much needed convenience. Nevertheless, the people at the new daycare center, did not take a long time to fall in love, but I could have told you that.
Since October, when Aiden had RSV, the Flu and Pneumonia, we have combatted a lot of upper respitory infections. We did have a stretch of 3 weeks that we did not visit our pediatrician! That is a big deal in our house! The pulmonolgist decided last week to try some new medicenes, because he doesn't seem to just get the sniffles. The slightest cold turns into an UBER upper respitory infection. She was concerned and even mentioned that he seems to be following the trend towards the dreaded "A" word - asthma. Keeping our fingers crossed that this new medicene regiment will do the trick (a least for awhile).
Aiden's world is going mobile :) or he is rather. He started off with 4 steps, and after that didn't take 1 for about 10 days. Then one evening it clicked. I came home from school and the muffin head was on the move. With lots of encouragement and fun from Daddy and Brandon, Aiden was zooming across the living room floor. Zooming might be an exageration, but for a 1 year old...zooming works for me. He has been walking, tottering, and wreaking havoc on 2 feet for a good solid 5 days. Daddy even has him walking to the truck to go bye bye :) I thought my life was busy before...it was just getting warmed up!
The last bit to share for now is about his hearing. The Ear, Nose and Throat doc is walking us through the process for cochlear implants. We have to have a sedated CT (next week) to see if the ear structure supports the implants, then we must also have a sedated ABR (hearing test). These are the preliminary steps we must go through to find out if he is a canidate for the implants. This doctor would have liked to have seen Aiden with implants by 12 months. He is now 14 1/2 months. He is trying to fast forward a normally 6 month process into 3. We will keep you posted about the next Adventures of Aiden. God Bless!
Wednesday, November 17, 2010
A year ago...
Much has happened in this past year. Lots of tears, smiles and laughs. As I sit hear in my living room tonight, I reflect on where I was sitting a year ago, in Florida Hospital South. That night, we didn't know if our little boy would live or die. Tonight, I listen to him giggling, playing with his big sister. We are truly blessed.
About 2 weeks ago, Aiden had a small cough. That cough quickly worsened. Within 2 days of a slight cough, Aiden was hospitalized for the flu, pneumonia, and RSV. Yep, all 3! We took up residence at Arnold Palmer hospital for 8 LONG days. Aiden was so uncomfortable for the 1st few days he barely slept, which in turn mom and dad barely slept. He was dehydrated, and received breathing treatments every 2 hours with little relief for the little punkin. He ended up having an IV in his head. It was the only good vein. The nurses asked, "Was he a premie?" We in turn replied, "Sure was." She commented, "I could tell by his attitude." This was a nasty bout that we just had to wait it out. He went into the hospital at 17# 14 oz. He left 16# 4 oz.
Aiden has hearing aids which he does not care for. It is a constant battle when we pin him down to get them on. He is small but his little hands are quick.
He is loving the dogs in our house, especially our Boxer, Maggie. She is so tolerant of him, more so than our Shih Tzus, but then again she doesn't have long hair to pull either. He is extremely active. Always into something the way a 1 year old should be. Aiden is pulling himself up on anything that will stand still and has his own unique way of crawling. He crawls along, but refuses to put his right knee down. It is quite a sight. :) He is not walking yet, but that will come in due time.
We have had so much love and support from our friends and family. Without it, I don't think we would have made it this year. So thank you! Whether you have asked for updates on the blog (which we have been bad about) or just concern in passing, we appreciate you. This has been a wild ride and we look forward to what God has in store for us.
About 2 weeks ago, Aiden had a small cough. That cough quickly worsened. Within 2 days of a slight cough, Aiden was hospitalized for the flu, pneumonia, and RSV. Yep, all 3! We took up residence at Arnold Palmer hospital for 8 LONG days. Aiden was so uncomfortable for the 1st few days he barely slept, which in turn mom and dad barely slept. He was dehydrated, and received breathing treatments every 2 hours with little relief for the little punkin. He ended up having an IV in his head. It was the only good vein. The nurses asked, "Was he a premie?" We in turn replied, "Sure was." She commented, "I could tell by his attitude." This was a nasty bout that we just had to wait it out. He went into the hospital at 17# 14 oz. He left 16# 4 oz.
Aiden has hearing aids which he does not care for. It is a constant battle when we pin him down to get them on. He is small but his little hands are quick.
He is loving the dogs in our house, especially our Boxer, Maggie. She is so tolerant of him, more so than our Shih Tzus, but then again she doesn't have long hair to pull either. He is extremely active. Always into something the way a 1 year old should be. Aiden is pulling himself up on anything that will stand still and has his own unique way of crawling. He crawls along, but refuses to put his right knee down. It is quite a sight. :) He is not walking yet, but that will come in due time.
We have had so much love and support from our friends and family. Without it, I don't think we would have made it this year. So thank you! Whether you have asked for updates on the blog (which we have been bad about) or just concern in passing, we appreciate you. This has been a wild ride and we look forward to what God has in store for us.
Wednesday, September 1, 2010
Big Day for Aiden!
I can not believe that that it is September 1st already! Where has the time gone. In a little over 2 short months our little man will be ONE sticky finger old! Aiden is patiently waiting for physical therapy to begin, which starts in 2 weeks. Why PT? Well, back in May when he had an evaluation for the Early Steps program he was not using his right side of his body. Well of course not it is not relevant today. The case coordinator asked just last week if I had any other concerns. My concern was he was not independently sitting. Well he decided to put momma in her place as if to say, "I got this!" because 4 days later he was sitting up on his own!He is also crawling just like G.I. Joe. Boy does he move fast! He continues to amaze me everyday!
We are back into school full swing now and Aiden is back at daycare. He has the sniffles but that is to be expected. He was recently weighed and was about 16# 8 oz.
This past 9 months have been 1 wild ride and today was another HUGE day for Aiden. Today Aiden received his hearing aids! There are pretty cool for lack of a better phrase! I was given the ins and outs of these little puppies and Aiden was a pro at letting mom put the aids in his ears. He even wore them for about 4 hourse straight without any complaints! What a trooper!
I think I watch too much TV, because what I INVISIONED was the hearing aids turning on and me saying something to Aiden and getting an amazed look on his face. That is not what I got unfortunately. Instead the hearing aids turned on and he was indifferent to them. He did not react to sound like I thought he would. Although a little disappointed, we are far from discouraged. The audiologist reassured me that with his type of deafness that he may hear really well for a few days and then there may be days he may not hear much at all. Today could have been one of those days. The aids do not make him hear, they just amplify sound.
Monday, August 9, 2010
8-9-10
It has been awhile since we have updated. No news is always good news.
Aiden is doing so well. He is a mover and a shaker! He can not sit still and is rolling all over. He is trying to figure out his his front and back work to crawl. He gets the back part up and ready, but he falls on his face when he tries to move forward. Last week we had a cardiologist check up, and a pediatrician well visit.
Cardiologist is pleased with what he sees. That means no new changes. Which is GREAT! We were given the "see you in a year" send off and were happy to get it!
At the pediatrician Aiden weighed in at 16 pounds and 1 ounce. He is currently 25 inches long. He is updated on all of his shots. He really is doing well.
Aiden is eating like a champ. Still only about 6 ounces. Anymore than that and it comes up and becomes an accessory to his outfit or anyone that might be holding him. He is eating lots of fruits and vegetables and drinking watered down juice.
Today he went to the audiologist at Arnold Palmer. A fantastic experience!
First, they know a good looking baby when they see one, because all of the woman in the office couldn't get over how cute he was. Always good to know they are smart when you go into a new facility. :)
The audiologist did a tympanic reading on both ear and also put us in a sound proof booth to check for sounds. I sat with Aiden in the middle of the booth and speakers were on both sides of us. They had a distractor in the middle to refocus him (a moving/mooing cow. The doc would say something into the speaker or create a sound to get him to react to it. Suprisingly enough, the little man reacted to some of the sounds. The lower/quieter noises (whispers, clicks, and the ocean) he didn't seem to react to. The audiologist stated that he reacted as a child with moderate hearing loss would. Mom was SUPER excited to say the least. Even though that is the case, he will still be considered to have sever/rpofound hearing loss.
The audiologist explained Aiden's type of hearing loss (auditory neuropthy) very well. The sound is able to get into the ear just fine, but once it gets past all the mechanics of the ear and into the nerve part, it is like a frayed telephone wire. You can have great signal, but still not be able to get all the sounds.
After all the testing, Aiden was fit for hearing aids. It was like a caulk gun with silly putty being sqirt into his ear. It was really cool to see. I wish I would have remembered the camera. BUT since he has to have new molds every 4-6 weeks (because he is growing) there will be time for pictures. His hearing aids are blue and they will go behind his ears. Mom picked red for his molds this time for the CUBBIES, but his brother seems to think it is for the Braves. NOT!!
We get hearing aids on September 1st barring any glitches in paper work. Insurance does not pay for hearing aids so we are grateful for assistance from the Early Steps Intervention program!!the cheapest set of hearing aids is around $800 and the molds alone are $85 for 1 ear!! It adds up quickly!!
Until next time...Philippians 4:13
But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
Aiden is doing so well. He is a mover and a shaker! He can not sit still and is rolling all over. He is trying to figure out his his front and back work to crawl. He gets the back part up and ready, but he falls on his face when he tries to move forward. Last week we had a cardiologist check up, and a pediatrician well visit.
Cardiologist is pleased with what he sees. That means no new changes. Which is GREAT! We were given the "see you in a year" send off and were happy to get it!
At the pediatrician Aiden weighed in at 16 pounds and 1 ounce. He is currently 25 inches long. He is updated on all of his shots. He really is doing well.
Aiden is eating like a champ. Still only about 6 ounces. Anymore than that and it comes up and becomes an accessory to his outfit or anyone that might be holding him. He is eating lots of fruits and vegetables and drinking watered down juice.
Today he went to the audiologist at Arnold Palmer. A fantastic experience!
First, they know a good looking baby when they see one, because all of the woman in the office couldn't get over how cute he was. Always good to know they are smart when you go into a new facility. :)
The audiologist did a tympanic reading on both ear and also put us in a sound proof booth to check for sounds. I sat with Aiden in the middle of the booth and speakers were on both sides of us. They had a distractor in the middle to refocus him (a moving/mooing cow. The doc would say something into the speaker or create a sound to get him to react to it. Suprisingly enough, the little man reacted to some of the sounds. The lower/quieter noises (whispers, clicks, and the ocean) he didn't seem to react to. The audiologist stated that he reacted as a child with moderate hearing loss would. Mom was SUPER excited to say the least. Even though that is the case, he will still be considered to have sever/rpofound hearing loss.
The audiologist explained Aiden's type of hearing loss (auditory neuropthy) very well. The sound is able to get into the ear just fine, but once it gets past all the mechanics of the ear and into the nerve part, it is like a frayed telephone wire. You can have great signal, but still not be able to get all the sounds.
After all the testing, Aiden was fit for hearing aids. It was like a caulk gun with silly putty being sqirt into his ear. It was really cool to see. I wish I would have remembered the camera. BUT since he has to have new molds every 4-6 weeks (because he is growing) there will be time for pictures. His hearing aids are blue and they will go behind his ears. Mom picked red for his molds this time for the CUBBIES, but his brother seems to think it is for the Braves. NOT!!
We get hearing aids on September 1st barring any glitches in paper work. Insurance does not pay for hearing aids so we are grateful for assistance from the Early Steps Intervention program!!the cheapest set of hearing aids is around $800 and the molds alone are $85 for 1 ear!! It adds up quickly!!
Until next time...Philippians 4:13
But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
Monday, June 28, 2010
A Joy!
Aiden is a pure joy! I know that is what every momma thinks but he really is! He has discovered those cute little piggies of his. He is quite the chatterbox as well. Research has indicated that children with hearing impairments will have a reduction in their babbling. While he is chatting, I am enjoying every minute of it! I would rather listen to him in the car than the radio :)
This past week he has also started to use his legs to push off. He looks like a little frog. Aiden is also into giving "kisses." If you are lucky enough to recieve one be sure to have a rag close to wipe off all the slobber that goes along with one of those precious kisses.
I recently entered Aiden into the Parents.com magazine cover photo contest. Voting ends July 5th so vote away!
I am currently looking for sign language classes for the family. Never too early to start!
Happy 4th to everyone! Be safe and GOD BLESS AMERICA!!!
Posted by: Mom
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