our day at Riley

Friday February 27, 2015

Our day started very early this morning. We were out the door at 6 am. It was so hard to leave Aaron. He hasn't been away from me for this long for a long time. I was not sure how he was going to handle the separation. My mom was so nervous to stay with him today. Luckily Dr C (urologist) was so nice and gave us a early surgery time so I could get back home in the early afternoon. We had to be there at 8:15 for Tae. We also had a Neuro appointment for Keag at 10:45am and they were kind enough to schedule his follow up appointment on the same day. We will find out the results of his sleep study and to see what she want to do to try and get rid of these headaches.

After some traffic due to an accident we made it to the hospital. They took him right back and everyone was so nice. I talked with the Dr and he said he was going to try and do it all through one incision. He was hoping that this would decrease his recovery time. They came to get him and it was the hardest thing to hand over my precious angel.

The surgery took a lot longer than they has anticipated. Finally they took me to the conference room to talk with the Dr. He said that he had to make 4 incisions because he found 2 hernias that needed to be repaired. He said that he had a lot of fibrous tissue that needed to be cleard away. He said that he got everything done and that he did great. I couldn't wait to get back to the recovery room.

I am so thankful that he did so well and that Dr C was able to repair everything. My precious little angel did so well on the way home. Love this boy so much!!

Keagans appointment went really well too. Dr T (neuro) decided to change his meds to see if we can get better control over the migraines. He is now going to be taking Topamax. We will gradually introduve this med while we slowly wean him off the Propranolol. I am praying that his gives him the much needed relief he deserves. I know they are "just headaches" but to have one everyday just isn't fair to this special little boy. Love him and his dimples!!

We got home around 2:40 and I am so thankful that everything went so well.  Aaron did great although he was a little stinker. Looking forward to a relaxing weekend of games and movies with my boys. Next week we have 6 appointments in 4 days plus therapy. We are going to be busy. 

Benjamin Franklin

Tuesday February 24, 2015

Nick is doing a speech on Benjamin Franklin tomorrow morning. He needed a costume and some props. It turned out so cute. I made a vest and sewed ruffles on the sleeves and shirt, made knickers and a kite. He is so excited to give his speech and absolutley loves his costume. It took some time but so worth all the work to spend time with Nick. He knew exactly what he wanted and was so fun to work with. Once he gets something in his mind there is no changing it!! He is so excited to give his speech. He can't wait to hear the other speeches. He said he is going to learn so much from all of the other kids. Love this kid!!

Dr appointment

Monday February 23, 2015

Aaron saw Dr C this morning. His sinus infection and ear infection are gone. We talked about his bloody noses, bloody stools and the bruises on his face (under his chin) and hand. He sent us for labs to check his platelets and clotting factors. He also said ththe had a fissure and we will get that checked out next week with Dr M. Poor kid. It has been so hard to get his dose of Miralax just right. It is either way too much or not enough. Hopefully Dr M will be able to help.

While we were at the lab we also got his sodium level checked along with Dr C's labs. They have such a hard time getting blood and he is so good. They ( 2 different techs) were able to get what they needed after 2 sticks. Hoping that all of his labs look good and we dont have to go back to see Dr C for a month.

So much for wishful thinking. Dr C's office called and we are being referred to Dr A due to low clotting factor. Waiting for the hematologist to read his labs and call for an appointment. All of these extra appointments are messing up our already busy schedule. Next week I have 6 appointmnets in 4 days. Thursday is our free day and I am looking forward to a pajama day!!

Not happy about waiting at the lab!!!!

1st birthday party

Sunday February 22, 2015

Keagan went to his first kindergarten friend party today. It was at Chuck E Cheese. He was so excited and had the best time. He LOVED playing all of the games with his friends. He was super excited that his "best friend" was also going to the party. They spent the entire time together.  I LOVE that he is making such good friends.

my sweet Taevon

Wednesday February 18, 2015

Tae had PT this morning. He is so tight and stiff I think he is constipated again. Poor kid. Even though he is stiff and not feeling his best he smiles. His smile melts my heart! I LOVE this little boy so much. He did so well in his gait trainer during therapy. After therapy I put him in his stander and he smiled the entire time. He has come so far in the last 2 years. I can't imagine the family without him. He is the sweetest little boy!

We are going to try Botox to help with his increased tone. I am praying that it makes a huge difference. His left arm is so tight and it is so hard to get his new brace on in the morning. I am looking forward to warmer weather so we can get outside. Taevon loves going for walks and swinging in the backyard. He is having surgery next Friday at Riley. I hate to put him through that but Dr C (urologist) says it needs to be done. Even though it is outpatient it is still very scary. The anesthesia loweres his seizure threshold and he just a had a very big one not that long ago. Hopefully after this surgery he will be done with any extra medical procedures. His routine appointments and therapy keep us busy enough!

Valentine's Day

Saturday February 14, 2015

Happy Valentine'sDay!! I LOVE holidays. The boys were very excited for today. They had a few surprises. I redid their bathrooom from Toy Story to Batman!! It was a hit!!!!


Aaron is feeling so much better. I couldnt help but kiss his sweet cheeks all day long. He LOVED his talking Jake.

Taevon on the other hand was NOT impressed with his activity ball. He is so funny and has some of the best expressions.

Nick and Keag were so happy to get Star Wars Itty Bittys. They have been talking about them for a few weeks.

I made cookies and cupckes for our game/movie night tonight. I am so lucky that these sweet little boys call me mom. I thank God every day for choosing me to be their mom. Loved spending the day with my 4 valentines!!

a trip to the dr

Wednesday February 4, 2015

Last night Aaaron started acting like he wasn't feeling well. He wasn't his normal happy self and his temp was very erractic. I stressed dosed him and kept a close eye on him during the night. Around 4am he woke up crying (which he never does unless he is sick) and with a temp of 102.9 (which is extremely high for Aaron, he usually runs in the 96's). I gave him some Tylenol and prayed we would make it until 8am when Dr C was open. He was starting to have seizures when I called and was lucky enough to get an appointment right away. I was hoping to see Dr C but he didnt have anything until 9:45a so I chose Dr S and was able to get right in. While I was talking to the phone nurse Aaron had a little seizures and I just knew thaat he was goingto be admitted. I prayed the entire way to the Dr thata he would be ok. I just kept thinking back to the last time he was sick like this, I waited to See Dr C at a later appointment and then ended up needing to call an ambulance. Once he got the the hospital he was in respiratory failure. I just prayed it was happening again.  And thankfully it wasn't.

We were also lucky enough to see Dr C instead of Dr S. He has an ear infection and a sinus infection. Dr C also said he had a virus because of the rash on his face and on both arms. Thank goodness his lungs sounded good and his heart rate was fine!! He put him on an antibiotic and will see us in 2 weeks for our next appointment. This sweet little boy amazes me everyday.

fun in the snow

Monday February 2, 2015

We are so glad we had a 3 day weekend. The boys could not wait to get outside and play in the snow. They had so much fun.

the little things

Monday February 2, 2015

Aaron is such a special little boy. He has taught me to always appreciate the small things, not to focus on the future, but to live in the moment. I cherish every second with this little angel. He LOVES Disney Junior. His favorites are Doc Mcstuffins, Mickey Mouse Clubhouse and Jake. He also absolutely adores Choo Choo Soul! Whenever he hears it he starts rocking and clapping. His face is priceless....

I am so thankful for these moments. There may be toys all over, dishes in the sink, laundry that needs to be folded and put away, but I am choosing to enjoy this time with my boys. Things eventually get done, but I know tomorrow with each of my kids isn't guaranteed.

Super Bowl party

Sunday February 1. 2015

Nick and Keagan were so excited to have a Super Bowl party this year. I bought decorations and made them cupcakes. We started the day off with football and helmet shaped pancakes. They watched the "puppy bowl" before the game. We also had some photo booth fun. I found some penalty flags and they had so much fun throwing them during the game. My sweet little Keagan only lasted until 9pm. Nick made ot to the end of the game. He had so much fun until the last20 seconds.  The Seahawks loss devestated him. He was so upset...