lego

Sunday September 29, 2013

Nicholas LOVES lego. He got to go to Brickworld today. He had so much fun seeing all of the lego. he made some pyramids and bought some small lego figures for himself and Keagan. He spent the rest of the afternoon playing with all of his Star Wars lego sets.

all I want for Christmas...

Saturday September 28, 2013

Taevon lost his 2 front teeth. He looks so cute when he smiles. They have been loose for awhile but because of his meds his gums grow over his teeth. They finally fell out at the same time

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Ultrazone

Saturday September 28, 2013

Nicholas celebrated his birthday with his friends at Ultrazone. They had so much fun. They got to play 2 games of laser tag, video games and ate pizza and cake. At the last minute they ended up playing another game. It was fun to watch him interact with all of his friends and to listen to their conversations. They are so funny.

Party

Sunday September 15, 2013

Today Nick finally had his family birthday party. We had to cancel it from last week because Nick was sick. We thought we were going to have to change it again because Aaron was in the hospital. Thankfully he was discharged Sat night. Taevon was very quiet due to his med increase and Aaron slept through the party.

Nick had the best time playing with his cousins. They ran around and played hide n seek. He and his cousin worked on his lego that he got from everyone. They enjoyed wearing the Super Hero masks. I LOVE having a house full of giggling kids!!!

 

PICU room 2

September 21, 2013

Aaron had a great nurse last night. This trip was a much better experience. All of the nurses and PA's were amazing. Our nurse in the ER was great and so nice to Aaron. It is easy to tell the ones that LOVE their job.

All of his labs came back normal, even his sodium level. 

Aaron decided that he didn't need his oxygen any longer and pulled out his cannula. I put it back in he said "nonononoooo" and pulled it out again. This time he threw it above his head. He was able to keep his sats up around 95 and never needed any the rest of the day. Dr Ch looked at his chest X-ray and said it was fine. Said it was just some stuff left over from April. He said he sounded clear and that the Rocephin would take care of whatever he had. Dr B (on call neuro) increased his Vimpat and ordered Diastat and the Ketogenic Diet. Unfortunately he is unable to do this diet due to his hypoglycemia. He remained stable and didn't have anymore seizures. He tolerated his feeds and was able to come home. This has been his shortest hospital say EVER. I am so thankful to his team of amazing Drs.

trip to the ER

Friday September 20, 2013

All of the boys are starting to feel better. Aaron has been in a great mood. I am thinking that he isn't going to get what the other boys have/had. WRONG!!

Around 5pm Aaron gets quiet. I think that he is just getting tired. Around 5:30 I hear "the sound" and I know he is having a seizure. I sit with him and talk to him and tell him its going to be OK Afterwards I scoop him up and just hold him. He starts to come around and I start to feed Taevon and he has another seizure. As I am looking at him I know we need to go to the hospital.  He doesn't look right and I just have a feeling. I get him ready and all of the things he needs and we leave. We get to the ER  and they instantly know that he is still seizing. They have such a hard time getting blood and an IV started. He is poked numerous times before  they are successful. He gets 2 doses of Ativan and they are talking about Phenobarbital. The second dose of Ativan (a full 1mg) finally calms him down. They do a chest X-ray and they want to do another one in the morning because there is something in the lower right lung.  His sats are low and he is placed on oxygen. He is admitted to the PICU.

Once settled in his room Dr CH orders a Urinalysis and an anchored cath. The nurses had a very hard time getting in the catheter and after both trying they call for some help. A nurse from the ER comes up and she is finally able to get one in place. His sats are in the low 90's so he placed on 1 liter of O2. He sleeps for the rest of the night.

really??

Wednesday September 18, 2013

Keagan has an ear infection and started throwing up this morning. Nick has been on an antibiotic since Saturday night and now has hives.  He is already allergic to Penicillin. Taevon still has a runny nose but luckily has not had any seizures today. Thankfully so far Aaron is still healthy and in a great mood. I thought we are doing better but it looks like we will be making a trip to the pediatrician in the morning. I am so incredibly thankful that I get to stay at home with my boys. I get to cuddle and snuggle with them when they don't feel good. The thought of not being there to comfort them makes me sad. I have been blessed with more than I deserve. Still waiting for a day with no medical issues...hopefully soon.

morning of appointments

Tuesday September 17, 2013

I spent the morning at the Drs with the boys.

Taevon had his ER neuro appointment and Dr O increased his Keppra from 300 mg bid to 500 mg  bid. He will recheck him soon and I need to call the nurse to give an update next week.

Taevon then saw Dr C about his blood pressure. It was back to normal!!!

Keagan and Nick both saw Dr C this morning. My sweet Keag has an ear infection and Nick's throat looks disgusting, but no ear infection.


I am so relieved about Tae's blood pressure. I am also very thankful that Dr O thinks an increase in his Keppra will work. I love my boys and wouldn't change a thing, but I need a break form all the medical issues, even if its just a few days.

a seizure

Monday September 16, 2013

This morning Taevon had a seizure. It totally caught me off guard. I was feeding him at 6am and giving him his meds. He was fine. I put away his things and went to give him some toys. He was looking off to the side and wouldn't take the toy. I thought he wanted in his blue chair and that's when it happened. I picked him up and he got very stiff. I thought he was just excited to get in his chair. I set him down and his right arm went up, and both his legs went straight out. I knew it was a seizure. It lasted about 5 minutes. Afterwards he was very groggy and not himself. It took a few hours for him to bounce back. I called Neuro and he has an appointment first thing in the morning. Then right after we have to rush to the Dr C for his blood pressure check up. I am hoping that he just needs an increase in his Keppra and that his blood pressure is lower. If that isn't enough Nick is sick and on a antibiotic and out of school and when I picked Keagan up from school he complained of not feeling well too. Aaron is doing great and I am hoping and praying he doesn't get sick.

view master

Saturday September 14, 2014

I found Keagan a view master. He LOVES it!! He had the best time looking at all of the Disney cards. He was so cute  looking at the pictures and telling me about that part in the movie. He is adorable!!

happy birthday

September 12, 2013

HAPPY 8th BIRTHDAY NICHOLAS!! 

I can't believe how fast time is going. I am so proud of the person you are becoming. You are such a sweet and caring little boy.  You make me smile everyday and are the funniest little boy. I thank God for you everyday!! I am so lucky to be your mommy.

I LOVE YOU!!

I LOVE this boy!!!!

Keagan's first day

Monday September 9, 2013

Today was Keagan's first day of school. He was so excited to go all day. I made him a "fun" lunch and he was very excited to see the other kids in his class.

!st day of school surprise

He had the BEST day! He was so excited to tell me about his day. He was very proud of his art projects.

I can't believe how fast time is going. My boys are growing up so fast. I am so proud of the people they are becoming. They are the sweetest little boys ever!!