Sunday July 28, 2013
Aaron has been doing great, but I know everything can change in an instant. Aaron slept a little longer than usual this afternoon. He didn't wake up until around 4pm. I got him up and instantly knew something was not right. I checked his blood sugar and it was 74 so that wasn't the problem. I really couldn't say what I thought was wrong for sure I just knew something wasn't right. I called Dr C's office and talked with the phone nurse. I decided to take him to the ER. He was at the point where I knew we had a little bit of time before he started to crash so I didn't call the ambulance. Once in the car he began having back to back seizures and became VERY lethargic. They took him right back at the ER and began working on him. His heart rate was very high and he continued to have seizures. He was finally given Ativan and they eventually stopped. It took everything I had not to burst into tears. He was admitted to the PICU AGAIN. Once again we are living moment to moment
Tuesday, July 30, 2013
In the blink of an eye
Sunday July 28, 2013
We had to take Aaron to the ER. He was admitted to the PICU
We had to take Aaron to the ER. He was admitted to the PICU
food truck addiction
Saturday July 27, 2013
Keagan went to Food Stock 2013. He had the best time. Keagan LOVES to eat if I would let him he would eat/snack all day long. He ate so much that he only ate a banana for dinner. He had Affine fries, a Bravas Reggie Miller Dog with ketchup, 1/2 of a Jumby's Joint bacon cheddar cheeseburger, Wiseguy chocolate ice and 1/2 a bottle of Sprite. He brought the rest of his sprite home for tomorrow. He only gets sprite on special days so he never lets it go to waste!
Keagan went to Food Stock 2013. He had the best time. Keagan LOVES to eat if I would let him he would eat/snack all day long. He ate so much that he only ate a banana for dinner. He had Affine fries, a Bravas Reggie Miller Dog with ketchup, 1/2 of a Jumby's Joint bacon cheddar cheeseburger, Wiseguy chocolate ice and 1/2 a bottle of Sprite. He brought the rest of his sprite home for tomorrow. He only gets sprite on special days so he never lets it go to waste!
Sunday, July 28, 2013
"I get a surprise"
Friday July 26, 2013
Keagan last his second tooth. We were getting ready to eat lunch and he yells "yea!! I get a surprise". Mommy I have something to tell you. I put my tooth under my pillow because when I put my Scooby Doo toy in my mouth and pushed real hard and my tooth fell out. Are you mad?" Keagan has a habit of putting everything in his mouth. The other day he was putting a cup on his mouth and inhaling so it would stay and he ended up with bruises around his mouth. Once we talked about not putting toys in his mouth AGAIN he was very excited. We do toys instead of money because of Nicholas. Nicholas has usually digs his teeth out and always catches us around 10pm with no cash. Since I always have a stock of "surprises" that's what they get under their pillows and they can hardly wait until morning. When I put Keag to bed he showed me where to put his surprise so he would see it when he opened his eyes! Too cute!!
so excited
Keag after sucking cup around his mouth!
I can't believe how fast my boys are growing up. Time is going way too fast for me!
Keagan last his second tooth. We were getting ready to eat lunch and he yells "yea!! I get a surprise". Mommy I have something to tell you. I put my tooth under my pillow because when I put my Scooby Doo toy in my mouth and pushed real hard and my tooth fell out. Are you mad?" Keagan has a habit of putting everything in his mouth. The other day he was putting a cup on his mouth and inhaling so it would stay and he ended up with bruises around his mouth. Once we talked about not putting toys in his mouth AGAIN he was very excited. We do toys instead of money because of Nicholas. Nicholas has usually digs his teeth out and always catches us around 10pm with no cash. Since I always have a stock of "surprises" that's what they get under their pillows and they can hardly wait until morning. When I put Keag to bed he showed me where to put his surprise so he would see it when he opened his eyes! Too cute!!
so excited
I can't believe how fast my boys are growing up. Time is going way too fast for me!
Friday, July 26, 2013
Aaron's appointment
Friday July 26, 2013
Aaron saw Dr C today. I was really looking forward to this appointment because I am so surprised about how much he has changed in the last week. He has gained 2 more pounds so he decreased his feeds to 60ml/hr and increased his free water to 75ml tid. We talked about him sleeping so much since he is usually only awake for about 5 hours a day. Dr C said its what he is needing right now so its ok unless the amount of sleep needed starts to increase. He was also glad that when he is awake he is alert. He was very pleased with how he is doing but reminded me of Aaron's cycles. I know this I just push it to the back of my mind. I can't let myself focus on the negative and dwell on the what ifs and whens. I am enjoying every second with this precious little angel. I never take one second for granted with any of my boys. I know how quickly things can change.
crawling with his backpack with feeding pump!
Aaron saw Dr C today. I was really looking forward to this appointment because I am so surprised about how much he has changed in the last week. He has gained 2 more pounds so he decreased his feeds to 60ml/hr and increased his free water to 75ml tid. We talked about him sleeping so much since he is usually only awake for about 5 hours a day. Dr C said its what he is needing right now so its ok unless the amount of sleep needed starts to increase. He was also glad that when he is awake he is alert. He was very pleased with how he is doing but reminded me of Aaron's cycles. I know this I just push it to the back of my mind. I can't let myself focus on the negative and dwell on the what ifs and whens. I am enjoying every second with this precious little angel. I never take one second for granted with any of my boys. I know how quickly things can change.
baking soda and vinegar
Friday July 26, 2013
The boys love science, especially Nicholas. We did some experiments with baking soda and vinegar. First we blew up some Ziploc bags. They had so much fun doing this one this one that we did it until we were out of bags.
Next we used the vinegar and baking soda to blow up balloons. We did this until we were out of vinegar. They had so much fun I'm going to go get more bags and vinegar tonight.
The boys love science, especially Nicholas. We did some experiments with baking soda and vinegar. First we blew up some Ziploc bags. They had so much fun doing this one this one that we did it until we were out of bags.
Next we used the vinegar and baking soda to blow up balloons. We did this until we were out of vinegar. They had so much fun I'm going to go get more bags and vinegar tonight.
Allergist
Thursday July 25, 2013
Nicholas went to the allergist today. He needs to have another skin test for his peanut/tree nut allergies. His first skin test was positive at a +3 while his blood test level was very low. The dr said the skin test is more sensitive. He will have that and if it is negative he will have the oral challenge. He is not looking forward to any of the tests. He was so cute at his appointment. I really didn't need to talk because he voiced all his concerns and wanted to know what was next. He was very curios as to why one test was positive and one was negative. He told them he was not too happy about the blood test because "the needle was in his arm for like 12 minutes" He also told them that he would rather eat a peanut product instead of plain peanuts. He makes me laugh. I am hoping that he doesn't make a huge deal out of the skin test again. He can be quite dramatic!
Nicholas went to the allergist today. He needs to have another skin test for his peanut/tree nut allergies. His first skin test was positive at a +3 while his blood test level was very low. The dr said the skin test is more sensitive. He will have that and if it is negative he will have the oral challenge. He is not looking forward to any of the tests. He was so cute at his appointment. I really didn't need to talk because he voiced all his concerns and wanted to know what was next. He was very curios as to why one test was positive and one was negative. He told them he was not too happy about the blood test because "the needle was in his arm for like 12 minutes" He also told them that he would rather eat a peanut product instead of plain peanuts. He makes me laugh. I am hoping that he doesn't make a huge deal out of the skin test again. He can be quite dramatic!
road trip
Nicholas has been going on vacation with grandma and grandpa. He LOVES road trips. He has been having the best time and I have been doing well with him being gone for days at a time. He first went to Michigan and Mackinaw Island. He loved riding the ferry. While he was there he crossed the bridge in a trolley, went to 2 forts, saw a lumberjack show where he won a chair made by a lumberjack, played at the beach and saw some light houses. He is looking forward to going back next year. (not sure with who, but he is planning his next trip)
Nick also went to a buffalo farm. He went out in the buffalo pin in a wagon and got to feed a buffalo. He had a very good time, asked lots of questions and learned a lot about buffaloes.
He went to the canal and took a boat ride. He also got to tour the mill. He had a god time and learned so much.
His next trip was to Columbus, Ohio. He is so funny and LOVES to stop at all of the rest stops. They skipped one and Nicholas said they had to stop "because he thinks he has a over active bladder and its real because he saw it on TV" He went to the zoo and the Wilds.
Nick also went to a buffalo farm. He went out in the buffalo pin in a wagon and got to feed a buffalo. He had a very good time, asked lots of questions and learned a lot about buffaloes.
He went to the canal and took a boat ride. He also got to tour the mill. He had a god time and learned so much.
His next trip was to Columbus, Ohio. He is so funny and LOVES to stop at all of the rest stops. They skipped one and Nicholas said they had to stop "because he thinks he has a over active bladder and its real because he saw it on TV" He went to the zoo and the Wilds.
Wednesday, July 24, 2013
Aqua therapy
Wednesday July 24, 2013
Taevon had his first aqua therapy session this morning. He LOVED it! It was so nice to see him able to move around without being so stiff. I saw lots of smiles and he was even kicking his right leg. He wore a collar to keep his head above the water which allowed his back to really stretch. I feel so lucky to have such incredible drs and therapists for my boys. With everyone working together I know Taevon is going to excel and have an even larger range of motion. I didn't get any pictures because of the large number of other kids having therapy in the pool, hopefully next time.
Taevon had his first aqua therapy session this morning. He LOVED it! It was so nice to see him able to move around without being so stiff. I saw lots of smiles and he was even kicking his right leg. He wore a collar to keep his head above the water which allowed his back to really stretch. I feel so lucky to have such incredible drs and therapists for my boys. With everyone working together I know Taevon is going to excel and have an even larger range of motion. I didn't get any pictures because of the large number of other kids having therapy in the pool, hopefully next time.
Monday, July 22, 2013
In awe
July 22, 2013
In awe of God's perfect plan
In awe of God's timing
In awe of God's mercy
Just when I was in the process of accepting Aaron's current state. Just when I was allowing myself to grieve for the little boy he was... not so much for myself although I have missed seeing him crawl and attempt to walk but for Aaron. He had worked SO hard in therapy to learn these skills and then it seemed they were gone. He was taking steps then not even able to hold up his head. As he realized he couldn't roll over or sit up anymore he just gave up and was content to be on his back. Now that sparkle is back n his eye
It seems like overnight Aaron has completely changed. He is crawling all over the place. He is pulling himself up on his knees and trying to stand. He is chasing Keagan! He is using all of his words and signs again. I am having a terrible time trying to keep his tube in, but I am loving every minute. I bought a play yard to try and keep him in an area where is tubing will reach. After about 10 minutes he figured out he could not get out and was very unhappy. So, I followed him around all day pushing his IV pole so he could play. I loved watching him play with all of his favorite toys again. I am enjoying every minute and waiting to see what God has in store for this special little boy.
I have learned so much from this amazing little boy. He has been through so much but he is the happiest little boy. He always has a smile. I don't take a second for granted with my boys because I have learned it can all change in a moment. I am thanking God for this time with Aaron.
In awe of God's perfect plan
In awe of God's timing
In awe of God's mercy
Just when I was in the process of accepting Aaron's current state. Just when I was allowing myself to grieve for the little boy he was... not so much for myself although I have missed seeing him crawl and attempt to walk but for Aaron. He had worked SO hard in therapy to learn these skills and then it seemed they were gone. He was taking steps then not even able to hold up his head. As he realized he couldn't roll over or sit up anymore he just gave up and was content to be on his back. Now that sparkle is back n his eye
It seems like overnight Aaron has completely changed. He is crawling all over the place. He is pulling himself up on his knees and trying to stand. He is chasing Keagan! He is using all of his words and signs again. I am having a terrible time trying to keep his tube in, but I am loving every minute. I bought a play yard to try and keep him in an area where is tubing will reach. After about 10 minutes he figured out he could not get out and was very unhappy. So, I followed him around all day pushing his IV pole so he could play. I loved watching him play with all of his favorite toys again. I am enjoying every minute and waiting to see what God has in store for this special little boy.
I have learned so much from this amazing little boy. He has been through so much but he is the happiest little boy. He always has a smile. I don't take a second for granted with my boys because I have learned it can all change in a moment. I am thanking God for this time with Aaron.
Sunday, July 21, 2013
At this moment
Sunday July 21, 2013
At this moment...
I am praising God AND watching Aaron crawl across the floor. I am so thankful. I didn't think I would see this again. Oh how I have missed chasing him around the house and hearing him squeal as he chases his brothers. I have missed all of his smiles when he finds his toys. I have just missed my Aaron. He is back and still proving all of the Drs wrong!!
At this moment...
I am praising God AND watching Aaron crawl across the floor. I am so thankful. I didn't think I would see this again. Oh how I have missed chasing him around the house and hearing him squeal as he chases his brothers. I have missed all of his smiles when he finds his toys. I have just missed my Aaron. He is back and still proving all of the Drs wrong!!
Tuesday, July 16, 2013
Dr M
Tuesday July 16, 2013
Aaron had his appointment with Dr M (GI Dr) today. He is having such a difficult time with granulation. Dr S burned it off once but it came right back. It looks so bad. Dr M was not very happy about Aaron's surgery. He did not understand why a fundal was not done. Even though he has a feeding tube and is on 60 ml/hr he can still vomit and aspirate. He said he was not consulted about the feeding tube at all. I guess I just assumed he had been consulted when they told me that they all thought this was in his best interest. He said he thinks a fundal should be done now but Aaron can't be put under again. The last 2 times he had problems with the last being the worst. I can see it from both sides. I wish he didn't have the tube because of all of the problems we are having and the fact that he is hooked to a IV pole 24 hours a day. I also wish that he could have bolus feedings instead of the continuous feed. On the other hand I am thankful that he has it because I am sure he is getting enough calories and I know he is getting all of his meds. I also know that has the Lennox Gastaut Syndrome progresses he will lose more motor function and it would have most likely be needed in the future and maybe he would have not been strong enough for the surgery at that point. I just need to let it go and trust that I made the right decision for Aaron. He looks so much healthier and is so much happier. I love this little boy and made the decision that I thought was best for him.
Aaron had his appointment with Dr M (GI Dr) today. He is having such a difficult time with granulation. Dr S burned it off once but it came right back. It looks so bad. Dr M was not very happy about Aaron's surgery. He did not understand why a fundal was not done. Even though he has a feeding tube and is on 60 ml/hr he can still vomit and aspirate. He said he was not consulted about the feeding tube at all. I guess I just assumed he had been consulted when they told me that they all thought this was in his best interest. He said he thinks a fundal should be done now but Aaron can't be put under again. The last 2 times he had problems with the last being the worst. I can see it from both sides. I wish he didn't have the tube because of all of the problems we are having and the fact that he is hooked to a IV pole 24 hours a day. I also wish that he could have bolus feedings instead of the continuous feed. On the other hand I am thankful that he has it because I am sure he is getting enough calories and I know he is getting all of his meds. I also know that has the Lennox Gastaut Syndrome progresses he will lose more motor function and it would have most likely be needed in the future and maybe he would have not been strong enough for the surgery at that point. I just need to let it go and trust that I made the right decision for Aaron. He looks so much healthier and is so much happier. I love this little boy and made the decision that I thought was best for him.
Bible school
July 8th -12th
The boys went to Bible School this week. They LOVED it. Nick's favorite part was the songs he learned and Keagan loved dancing to the music. They had a cd for sale and it was the best 10 dollars I have ever spent. They listen to it every day and sing and dance all day long. Nick really absorbed all he hears and was very excited to share the lessons. His favorite was learning about God the Father, God the Son, and God the Holy Ghost.
On Thursday they had a dinner and the boys got to song all of the songs they learned. They had such a good time.
On Friday they got to play in the water from the fire trucks. This was one of their favorite parts. The firefighters sprayed water on them from their fire hoses.
They LOVED every minute of Bible School and are looking forward to next year!
The boys went to Bible School this week. They LOVED it. Nick's favorite part was the songs he learned and Keagan loved dancing to the music. They had a cd for sale and it was the best 10 dollars I have ever spent. They listen to it every day and sing and dance all day long. Nick really absorbed all he hears and was very excited to share the lessons. His favorite was learning about God the Father, God the Son, and God the Holy Ghost.
On Thursday they had a dinner and the boys got to song all of the songs they learned. They had such a good time.
On Friday they got to play in the water from the fire trucks. This was one of their favorite parts. The firefighters sprayed water on them from their fire hoses.
They LOVED every minute of Bible School and are looking forward to next year!
4th of July
Thursday July 4, 2013
The boys had a great 4th. They got to go to grandmas for lunch and the Tin Caps game at night. They loved the fireworks. Aaron LOVES fireworks. He laughs so hard every time he hears them.
The boys had a great 4th. They got to go to grandmas for lunch and the Tin Caps game at night. They loved the fireworks. Aaron LOVES fireworks. He laughs so hard every time he hears them.
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