Wednesday November 21, 2012
Aaron had another Dr appointment with Dr C. His heart rate was 72 and he had only lost 1 ounce. Dr C said he wished he knew what was wrong and could say that he made him better but that he is glad he is seeing some improvement. He says we are on the right track seeing the Endo, GI Dr, Neuro and dietician. We still think the feedibng tube is the best for Aaron but are going to wait and see about the results from Dr M's (GI Dr) tests. We had to schedule another appointment but I am just so thankful that he is doing better.
Sunday, November 25, 2012
Monday, November 19, 2012
Aaron's Party
Saturday November 17, 2012
We had Aaron's 5th birthday party today. He looked like such a big boy today. I still can't believe that he is 5 years old. Time is going way too fast. I did a Very Hungry Caterpillar party for him this year. He was so funny. He had no interest in opening any of his gifts. All he wanted to do was play with his ball that he has had far awhile.
We had Aaron's 5th birthday party today. He looked like such a big boy today. I still can't believe that he is 5 years old. Time is going way too fast. I did a Very Hungry Caterpillar party for him this year. He was so funny. He had no interest in opening any of his gifts. All he wanted to do was play with his ball that he has had far awhile.
Tuesday, November 13, 2012
Another new Dr for Aaron
Tuesday November 13, 2012
Aaron saw Dr M (GI Dr) this morning. This was his first appointment to see if maybe he can figure out why Aaron does not want to eat or drink. He ordered some labs and a test to see if Aaron's stomach is emptying. We did the labs after the appointment and he did so well. Everyone knows Aaron and they called "his special friend" (Karen) to draw his labs. She is so nice and good with Aaron. He is scheduled for his Gastric Emptying Study on November 28th at 7:30am. He also wants to do another swallow study and upper GI. My sweet little boy seems to be doing better although he is still not wanting to eat or really drink. He is still having seizures but they are less frequent. They increased his Keppra so I am praying that that will help. He has a lot more appointments coming up in the next week and I am hoping that he has continued to gain weight.
Aaron saw Dr M (GI Dr) this morning. This was his first appointment to see if maybe he can figure out why Aaron does not want to eat or drink. He ordered some labs and a test to see if Aaron's stomach is emptying. We did the labs after the appointment and he did so well. Everyone knows Aaron and they called "his special friend" (Karen) to draw his labs. She is so nice and good with Aaron. He is scheduled for his Gastric Emptying Study on November 28th at 7:30am. He also wants to do another swallow study and upper GI. My sweet little boy seems to be doing better although he is still not wanting to eat or really drink. He is still having seizures but they are less frequent. They increased his Keppra so I am praying that that will help. He has a lot more appointments coming up in the next week and I am hoping that he has continued to gain weight.
Lost tooth
Monday November 13, 2012
Nicholas lost his first tooth on top! It isnt a front tooth but one on the side. He looks so cute when he smiles. I can't believe I missed his excitement but I had to go to a training for T. I wish I would not have missed seeing his face.
Nicholas lost his first tooth on top! It isnt a front tooth but one on the side. He looks so cute when he smiles. I can't believe I missed his excitement but I had to go to a training for T. I wish I would not have missed seeing his face.
Monday, November 12, 2012
Happy Birthday Aaron
Sunday November 11, 2012
Happy 5th Birthday Aaron!! I can't believe that you are already 5 years old. It seems like yesterday you came into our lives. You are such an amazing little boy. You have been through more than any child should go through and yet you are full of smiles. I love you so much and thank God for you everyday. You have worked so hard and come so far in the last 3 years. I wish the Drs and therapists in Seattle could see you now. I now you have such a special purpose and I can't wait to see what you will teach me next. You have taught me to love deeper and ignore those who dont see your value. You are such an angel and have brought me so much joy. I cant imagine a day without seeing your precious smile and hearing the sweet sound of your giggle. I look forwarsd to seeing what you will accomplish this next year. I love you my sweet boy and will go to the ends of the Earth to make sure you have the best medical care. HAPPY BIRTHDAY Aaron. I LOVE you to the moon and back.
Happy 5th Birthday Aaron!! I can't believe that you are already 5 years old. It seems like yesterday you came into our lives. You are such an amazing little boy. You have been through more than any child should go through and yet you are full of smiles. I love you so much and thank God for you everyday. You have worked so hard and come so far in the last 3 years. I wish the Drs and therapists in Seattle could see you now. I now you have such a special purpose and I can't wait to see what you will teach me next. You have taught me to love deeper and ignore those who dont see your value. You are such an angel and have brought me so much joy. I cant imagine a day without seeing your precious smile and hearing the sweet sound of your giggle. I look forwarsd to seeing what you will accomplish this next year. I love you my sweet boy and will go to the ends of the Earth to make sure you have the best medical care. HAPPY BIRTHDAY Aaron. I LOVE you to the moon and back.
Friday, November 9, 2012
So thankful
Friday November 9, 2012
Aaron is doing better!! He gained and his heart rate was good!! I am so thankful!! I really thought he was going to have to be admitted because he had been sleeping so much and having so many seizures. We are still going forward with talk of a feeding tube and he has an appointment with Dr M (GI Dr) on Tuesday. He had his labs this morning to check his Keppra level and we are still waiting for the Neuro (Dr O) to schedule his Video EEG. I feel so lucky to have such amazing Drs taking care of my sweet angel.
LOVE this baby
Keagan got up this morning and said he felt fine. His ear didnt hurt at all. He said "I 'tink' I eat too much pizza with my grandma and grandpa" (they took him to Pizza Hut for dinner) He is so funny! I am just glad that he is feeling better. Looking forward to a great weekend with my boys!
Aaron is doing better!! He gained and his heart rate was good!! I am so thankful!! I really thought he was going to have to be admitted because he had been sleeping so much and having so many seizures. We are still going forward with talk of a feeding tube and he has an appointment with Dr M (GI Dr) on Tuesday. He had his labs this morning to check his Keppra level and we are still waiting for the Neuro (Dr O) to schedule his Video EEG. I feel so lucky to have such amazing Drs taking care of my sweet angel.
Keagan got up this morning and said he felt fine. His ear didnt hurt at all. He said "I 'tink' I eat too much pizza with my grandma and grandpa" (they took him to Pizza Hut for dinner) He is so funny! I am just glad that he is feeling better. Looking forward to a great weekend with my boys!
Thursday, November 8, 2012
Day of appointments
Thursday November 8, 2012
Tomorrow Aaron has appointments with Dr C, Dr O and needs to have some labs drawn. It is going to be a long day for him.He hasn't really been drinking for the last few days and I am hoping that he has not lost more weight. He slept a lot today which probably means that his heart rate has dropped again. I pray that it is OK so that he does not have to be admitted to the hospital again. He had an OK day today. When he was awake he wanted to play with his ball. Nothing is cuter than him asking for his ball! Now my poor little Keagan has gotten out of bed tonight complaining of his ear hurting. After some Tylenol and snuggling he was able to go back to sleep. I hope they will just squeeze him in with Aaron's appointment and not make a different one. I pray that Aaron doesn't come down with something else. It is so hard for him to fight off any infections due to his lowered immune system. Hopefully it will be a quiet night and the boys will sleep through the night...right...I can always hope!
Tomorrow Aaron has appointments with Dr C, Dr O and needs to have some labs drawn. It is going to be a long day for him.He hasn't really been drinking for the last few days and I am hoping that he has not lost more weight. He slept a lot today which probably means that his heart rate has dropped again. I pray that it is OK so that he does not have to be admitted to the hospital again. He had an OK day today. When he was awake he wanted to play with his ball. Nothing is cuter than him asking for his ball! Now my poor little Keagan has gotten out of bed tonight complaining of his ear hurting. After some Tylenol and snuggling he was able to go back to sleep. I hope they will just squeeze him in with Aaron's appointment and not make a different one. I pray that Aaron doesn't come down with something else. It is so hard for him to fight off any infections due to his lowered immune system. Hopefully it will be a quiet night and the boys will sleep through the night...right...I can always hope!
Wednesday, November 7, 2012
Painting pumpkins
Wednesday November 7, 2012
We finally got around to painting pumpkins tonight. With Aaron being in and out of the hospital and not feeling well we never got around to painting last month. The boys were so excited to finally get out the paint. Aaron was in a great mood and was full of smiles and giggles. Taevon is so funny. He has the cutest smile until he sees the camera!!
We finally got around to painting pumpkins tonight. With Aaron being in and out of the hospital and not feeling well we never got around to painting last month. The boys were so excited to finally get out the paint. Aaron was in a great mood and was full of smiles and giggles. Taevon is so funny. He has the cutest smile until he sees the camera!!
Tuesday, November 6, 2012
Basketball
Tuesday November 6, 2012
Nicholas had a basketball game tonight. He is doing so well this year. It is so cute when he yells "I'm open". He got his team pictures today and they are so good. I LOVE watching him play!
Nicholas had a basketball game tonight. He is doing so well this year. It is so cute when he yells "I'm open". He got his team pictures today and they are so good. I LOVE watching him play!
Xrays
Monday November 5, 2012
Nicholas had a dentist appointment today. He finally got his xrays taken on BOTH sides!! This has been a work in progress :) We had only been able to get one side one time. He would gag and choke and make a huge scene (he is SO dramatic) so they wouldn;t make him do them. Everything looked great and NO cavities!!
His dentist has an arcade for the kids. They get a token after each visit and they can play Pac-Man, Donkey Kong or Out Run. Nick LOVES Pac-Man.
Nicholas had a dentist appointment today. He finally got his xrays taken on BOTH sides!! This has been a work in progress :) We had only been able to get one side one time. He would gag and choke and make a huge scene (he is SO dramatic) so they wouldn;t make him do them. Everything looked great and NO cavities!!
Saturday, November 3, 2012
Nutcrackers and Gingerbread houses
Saturday November 3, 2012
Nicholas is the funniest little boy ever. He is currently obsessed with Nutcrackers!! He wanted to go to JoAnn Fabrics so he could get one that he saw when he was shopping with grandma. She let him chose one and he had such a hard time deciding between a chef and a leprechaun. He bought the chef and now he "really needs the other to make his collection complete" He makes me laugh.
After buying his Nutcracker he went to grandma and grandpas to work on their gingerbread house. He and grandpa have entered a gingerbread house contest and they only have 2 more weeks to get it done. He is so excited for the contest and says he can't wait for the award ceremony. I thank God every day for this little boy. He is such an amazing gift!
Nicholas is the funniest little boy ever. He is currently obsessed with Nutcrackers!! He wanted to go to JoAnn Fabrics so he could get one that he saw when he was shopping with grandma. She let him chose one and he had such a hard time deciding between a chef and a leprechaun. He bought the chef and now he "really needs the other to make his collection complete" He makes me laugh.
After buying his Nutcracker he went to grandma and grandpas to work on their gingerbread house. He and grandpa have entered a gingerbread house contest and they only have 2 more weeks to get it done. He is so excited for the contest and says he can't wait for the award ceremony. I thank God every day for this little boy. He is such an amazing gift!
More seizures
Friday November 2, 2012
Aaron is having even more seizures. He is now starting to jerk, gets stiff and his arms go out to the sides. Afterwards he is really out of it for awhile. They have taken off the Onfi thinking it was causing all of the symptoms that put him in the PICU but now they aren't so sure. All of his symptoms are coming back. He is on 4.5 ml of Keppra twice a day and the Dr O (neuro) wants me to call Monday or Tuesday to let him know how Aaron is doing. I am praying that they are able to find the right med and the right dose to get these seizures under control. I miss his smile and all of his energy. I am hoping that tomorrow is another good day for him.
love this boy!!!
Aaron is having even more seizures. He is now starting to jerk, gets stiff and his arms go out to the sides. Afterwards he is really out of it for awhile. They have taken off the Onfi thinking it was causing all of the symptoms that put him in the PICU but now they aren't so sure. All of his symptoms are coming back. He is on 4.5 ml of Keppra twice a day and the Dr O (neuro) wants me to call Monday or Tuesday to let him know how Aaron is doing. I am praying that they are able to find the right med and the right dose to get these seizures under control. I miss his smile and all of his energy. I am hoping that tomorrow is another good day for him.
Thankful to be home
Friday November 2, 2012
Aaron went to Dr C this morning. He lost 3 ounces, but Dr C said it was OK so he didn't feel he needed to do anything right away. He wants to see him again next week. His heart rate was up to 80!!! I am so thankful that we were able to come home. He said he had been thinking about Aaron and thinks he should see a Gastroenterologist. He wants to make sure there isn't anything wrong that we are missing and that Dr M (GI Dr) can make the final decision on the feeding tube. He does think that the feeding tube is going to be the best thing for Aaron. I am worried about him pulling it out but I will do whatever is best for Aaron. Knowing that he has a high risk for sudden death and that there isn't really anything they can do for Aaron when his heart rate goes down make me so thankful for his good days. Today has been a good day. He has been full of smiles and giggles. I love this little boy and will do whatever I need to do to keep him healthy. I am just taking it day by day and treasuring every moment with this special little boy.
Aaron went to Dr C this morning. He lost 3 ounces, but Dr C said it was OK so he didn't feel he needed to do anything right away. He wants to see him again next week. His heart rate was up to 80!!! I am so thankful that we were able to come home. He said he had been thinking about Aaron and thinks he should see a Gastroenterologist. He wants to make sure there isn't anything wrong that we are missing and that Dr M (GI Dr) can make the final decision on the feeding tube. He does think that the feeding tube is going to be the best thing for Aaron. I am worried about him pulling it out but I will do whatever is best for Aaron. Knowing that he has a high risk for sudden death and that there isn't really anything they can do for Aaron when his heart rate goes down make me so thankful for his good days. Today has been a good day. He has been full of smiles and giggles. I love this little boy and will do whatever I need to do to keep him healthy. I am just taking it day by day and treasuring every moment with this special little boy.
Phineas and Ferb
Friday October 26, 2012
Nicholas and Keagan went to see Phineas and Ferb tonight. They were so excited and couldn't stop talking about it today. They had so much fun and Nick was so excited to see some of his friends from school. They each bought a toy and have been battling each other ever since!! Too cute
Nicholas and Keagan went to see Phineas and Ferb tonight. They were so excited and couldn't stop talking about it today. They had so much fun and Nick was so excited to see some of his friends from school. They each bought a toy and have been battling each other ever since!! Too cute
Another Dr appointment
Wednesday October 31, 2012
Aaron went to the Dr again this morning. He is still losing weight and his heart rate has dropped yet again. He also has a infection on his chin. He was given an antibiotic and will be seen again on Friday. If he is not better or has lost more weight he will be admitted in to the hospital again. Dr C is also going to send us to see Dr S (surgeon) about a feeding tube. I know it is what is best for Aaron I just worry about him pulling it out all the time. He has such a high pain tolerance and he likes to rub is little belly when he goes to sleep, and he is the strongest little boy ever!! I have no idea how I am going to keep him from pulling it out. I will do whatever is necessary to keep my sweet angel healthy so we will figure it all out. He is such a special little boy and has brought me so much joy. I pray that he will start feeling better and get back to his silly happy self.
Aaron went to the Dr again this morning. He is still losing weight and his heart rate has dropped yet again. He also has a infection on his chin. He was given an antibiotic and will be seen again on Friday. If he is not better or has lost more weight he will be admitted in to the hospital again. Dr C is also going to send us to see Dr S (surgeon) about a feeding tube. I know it is what is best for Aaron I just worry about him pulling it out all the time. He has such a high pain tolerance and he likes to rub is little belly when he goes to sleep, and he is the strongest little boy ever!! I have no idea how I am going to keep him from pulling it out. I will do whatever is necessary to keep my sweet angel healthy so we will figure it all out. He is such a special little boy and has brought me so much joy. I pray that he will start feeling better and get back to his silly happy self.
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