bike riding

Sunday March 30, 2014

Keagan has had a few good days. No headaches and has been up wanting to play. It is so nice to see him smiling again. Today he could not eat breakfast fast enough and get outside to ride his new bike. He got on his bike and after a push took off. It took him a few times to figure out the steering but after that he was gone. He was riding with one hand after a few minutes and even tried "hey mom look no holding on" before he fell off. He got right back up and tried no hands again. Keagan is my little dare devil. Nothing scares this child. Listening to his giggles sand seeing his smile was precious. LOVE this boy!

new bike

Saturday March 29, 2014

Keagan got a new bike. He is ready to go bike riding this weekend. He LOVES his new helmet!!

spring break is here

Friday March 28, 2014

Finally...Spring Break!!

Nicholas and Keagan were so excited to get a start on their break that they set their alarm and were up at 1:30am!!!! They were not to happy when ai put them back to bed until 6am. They were ready to play. Today was our LEGO day. They each got a new set of LEGO. They spent all day sitting at their LEGO table creating. It is fun to watch their imaginations at work.

outside

Friday March 22, 2014

Keagan had a fairly good day today. No leg pain but he did complain that his arm was very tired, too tired to eat eat breakfast. He was up playing for awhile before his head started to hurt.  He had to go to bed for about 2 hours because of a headache but felt better later on. We went outside to play with some sidewalk chalk. He even went to see the Muppet Movie last night. I am hoping that he is starting to feel better after all of the antibiotics.

Kindergarten

Tuesday March 18, 2014

Tonight was Kindergarten Round Up for Keagan. I can't believe how fast time is going. It was a little sad tonight, he is my last one to go to kindergarten. My boys are growing up and I am not ready. Time is going too fast for me. Keagan is looking forward to going to school with Nicholas and riding the bus.

LOVE this boy!

Keagan is still not feeling well. Poor baby still has a headache and no energy. He just stays in bed all day. He has 2 more days left of his antibiotic. I am thinking if it was a sinus infection he should be feeling much better by now. He is also looking a little pale and still not really wanting to eat. He will probably see Dr C later this week if he is still not feeling well.

St Patty's Day

Monday March 17, 2014

I couldn't wait for my little leprechauns to get up this morning. They were so excited to see their surprises.

Nicholas got a 3 pack of Skylander Swap Force, mini Lego Movie character and a pack of Gogos.

Keagan opened Octonaut figures, mini Lego Movie character, and a pack of Gogos.

Taevon opened blocks that rattle. He loves anything that rattles!

Aaron opened a lion ball. He has begun to explore new toys! Its great to see him play with new things!!

I love any little holiday where I can surprise the boys with fun things. I am looking forward to spring break and have a whole list of fun things planned. Every time I get to do these fun things I thank God for making all my dreams come true! I am so lucky to be Nick, Taevon, Keagan and Aaron's mom!!

learning new things

Sunday March 16, 2014

Aaron is such a special little boy. He has been through a lot in his short life. He has taught me so many things. When he was diagnosed with Lennox Gastuast Syndrome I feared the worst. I researched and read everything I could find on this debilitating disease. I let fear take over. I lost sight of all that he had accomplished despite what the Drs told me. I envisioned all that he had gained lost forever. I mourned the little boy he was and prepared myself for what was to come. I am still waiting....

Aaron has once again proved everyone wrong. We are seeing NO effects of this awful disease. He has not lost his communication, in fact he is gaining in this area. He is using his words more and even learning new sounds. Since his diagnosis 19 months ago he has learned to say "mama" and has his own words for many things. He shakes his head yes or no and will say "Ya" for yes. He is so opinionated.

He did lose some gross motor skills but he is now crawling again and working hard in therapy. Since he is now losing some weight he has been moving around a lot easier. He had gained so much weight so fast with his G tube that he quit moving around. It is great to see him up in a gait trainer.

Cognitively he is moving ahead leaps and bounds. He is more aware of things than ever before. He now enjoys TV. This is major. This is something brand new. Before he did not care what was on TV or if it was even on. At times he would become over stimulated with the noise and cry. Now he picks what he wants to watch. He LOVES Disney JR!! Mickey, Jake, Sophia and Doc Mcstuffins are his favorites. If we ask him what he wants to watch and start to list his shows he will say "ya" when we say the right one. He also knows if that is the one we are turning on. I accidentally turned on the wrong show and he started screaming until I changed it to the right show. He also interacts with the shows. When Mickey asks  "Do you want to come inside my clubhouse?" Aaron yells "Ya". It is amazing.  He also answers Jake about being in his pirate gang.
He also interacts so much more with all of us. He and Nick have such a special bond. It is so sweet to watch them together. Nick is such a great big brother. He likes to play Plants vs Zombies with Aaron. When he asks Aaron if he wants to help him catch Zombies Aaron gets so excited. He yells "Ya" Seeing his face light up as Nick talks to him and seeing Nicks face at Aaron's response is precious.

He  is truly a miracle and God is doing amazing things in his life. I cant wait to see all that he will learn. I am enjoying every second I get to spend with this amazing little boy. I am no longer mourning what once was but am waiting to see what is to come.

catching zombies with Nick

the dreaded headaches

Friday March 14, 2014

Keagans headache is back and it is really bad. Yesterday I just knew that it was a sinus infection. He had been on the antibiotic for a few days and he felt better. Yesterday was headache free. Keag was so excited to tell me that his head didn't hurt at all. He was up playing and eating. This morning he woke up and didn't want to eat and said his head hurt again. It has gotten worse as the day has went on despite all of the Tylenol. If not a sinus infection then what? He is miserable and there is nothing I can give him that makes him feel any better. If he does not get any better than we will see Dr C next week when he is done with his antibiotic.

snow day

Wednesday March 12, 2014

The kids had another snow day today. Nick was beyond excited. Keagan is still not feeling good and still has a headache. I have gone through so many bottles of Tylenol, Advil and Motrin and nothing is working. He is on his second day of antibiotics, so hopefully he will start feeling better soon.

The boys got a package of gogos this morning. They look forwards to their "snow day surprises".  Keagan stayed in bed all day and Nicholas played video games.

still not feeling well

Aaron and Taevon like having the kids home all day. Aaron wants to be around Nicholas all the time. He loves it when Nick talks to him and plays with him. Nick plays Plants vs Zombies. When Nick asks Aaron if he wants to help him catch Zombies, Aarons face lights up and he yells "ya". He LOVES Nick and I LOVE watching them interact.

best buds!

no pediatric neuro??

Tuesday March 11, 2014

Taevon had a Neurology appointment with Dr O this morning (right after Keags appointment with Dr C).
He said he didn't want to change anything since increasing his Keppra has helped decrease his seizures. Right now he is having just a few a month. Dr O is retiring in May and they have not found another Pediatric Neurologist to take his place. He said my options with Tae are Methodist or Riley or a Dr in South Bend. Dr K is unable to take him because she is already full and Tae does not have other conditions complicated by his Epilepsy. So we decided that for right now Dr C will be in charge of his Neuro care since he is doing well. If is conditions changes then Dr C will have to refer us to Riley or Methodist. I know it is not the end of the world, and I know people are going through worse things but really? a special needs child with no Neurologist...oh and he wasn't completely sure if Dr C would be comfortable overseeing his neuro care...I am praying that Dr K takes Aaron since she has already took care of him when he had Aspiration Pneumonia in March 2013. He has neuro appointments all the time and I really don't have the time to drive to Riley a few times a month.

an antibiotic

Tuesday March 11, 2014

Keagan saw Dr C this morning. We went over all of his symptoms, some are the same while others are getting worse. Dr C said maybe a sinus infection?? (he said even though the CT scan in Feb was clear) so he gave him an antibiotic for the next 10 days. If he is back to normal than no follow up until his next appointment in May. If he is not doing any better than we will see him sooner. I am hoping and praying this works. He has not felt good for awhile. All he does is sleep and stay wrapped up in blankets. I miss my wild and crazy boy!

glow in the dark

Monday March 10, 2014

My sweet Keagan is still not feeling well today. He will see Dr C tomorrow. He spent all day in bed today and nothing helped his headache. I thought maybe if he got up he would feel better. The light was making his head hurt worse and making his stomach hurt. I decided to let him play in the bathtub in the dark. I bought glow sticks for spring break but opened them today. Keag had a glow in the dark bath. He had the best time. He played for about 15 minutes until his head started hurting more. He made sure to ask if he could have another "glow bath" tomorrow. Of course Nick had to have one too. This will definitely be a weekly treat for the kids.

more headaches

Friday March 7-March 9, 2014

Keagan is still not back to his wild and crazy self. He has had a headache since Friday morning. Neither Tylenol or Advil are helping. He has not been feeling well since November. He is still complaining of food not tasting right and having a bad taste in his mouth. Some days he eats and others he doesn't eat all day. He is always cold and He has had a cold for about a month and can't seem to get rid of his cough. I'm going to call Dr C in the morning and get him in sooner than his next appointment.

Saturday night he still wasn't feeling well but he felt ok enough to go to Disney on Ice. He LOVED the show. He bought a Maleficent sword and has been slaying monsters ever since last night.

sunshine

Sunday March 9, 2014

We are so ready for warm weather. Aaron and Tae are ready for the sun tomorrow.

I am so excited to be able to take the kids out tomorrow. So thankful to be able to spend all day loving on my boys. I am sad that Nicholas has school until 3:35pm tomorrow. Hopefully it will still be warm and we can all go outside once he gets home. Gods plan is far better than I could have ever imagined. I always saw myself needing to work and not being able to stay at homne. WOW!! I LOVE being able to stay at home with the boys.

Aaron

Friday February 28, 2014

Aaron had an appointment with Dr C this morning. He has lost some more weight which is great news! Dr C wants him to continue to lose more weight until he gets to a more ideal weight.  He said this is the most alert he has seen Aaron and that he looks great His heart rate was actually in the NORMAL RANGE!! He is doing so well!! We usually see Dr C every month but now he is going to try and stretch it out for 2 months. It makes me nervous but I know he is going to be fine. It is just reassuring for Dr C to check him out every month. We have made it almost through the winter with no illness and no ER trips or hospital stays since September. So thankful.... Enjoying every moment with this precious angel.