lucky

Sunday May 10, 2015

HAPPY MOTHER'S DAY!!

This is one of my favorite holidays. I whole day to be thankful for my greatest gifts from God. I feel so lucky and blessed to be called mommy. I waited so long and each of my boys was so worth the wait. Nicholas my first angel who made me a mom. I Love this boy with all my heart. He is such a sweet little boy. He is so smart and always thinks of other's feelings. He is a awesome big brother and Aaron LOVES playing Plants vs Zombies with his Nick Nack.  A few years later God chose us to be Aaron's forever family. I fell in LOVE with him as soon as I saw a picture. I just knew that he was meant to be a part of our family. During the long wait for us to be approved and then for him to finally come home we were given the sweet gift of my precious Keagan. During the interview we were told about his history and the fact that he had Reactive Attachment Disorder. I knew in my heart I was meant to be his mommy. The very next day we got the call to come and pick up our sweet boy. It still breaks my heart to think about the fear in his eyes as I buckled him into his car seat in our car that first time. He was so independent but the very first night I picked him up, he smiled and put his head on my shoulder. LOVE!! He is the most affectionate little boy ever. I treasure each hug, kiss and "I LOVE YOU MOMMY from this special boy. Just a few short months later Aaron came home! It was so exciting to have him home at last. He had a very hard time adjusting. He was so loved in his foster home in Seattle that he missed his foster dad immensely. It took a few weeks for him to calm down and he has been the happiest little boy ever since. He has a lot of medical issues but he ALWAYS has a smile. We have a had a few close calls with Aaron and I have learned to take nothing for granted. I cherish EVERY second God allows me to have with my special little angel.  Mornings are particularly hard for me when I don't hear him when I wake up. I beg God Please don't let it be today, I am not ready yet  as I run to his room. Our last little treasure came to us just  few years ago. Taevon finally made it home when he was 5 years old. I remember seeing his picture for the first time and I fell in love with him. He has been such a blessing ever since. It took a awhile to gain his trust due to his history of abuse and because he was not in a very good foster home in Tacoma. He has blossomed and learned to do so many new things. His smile lights up the entire room and I LOVE the sound of his sweet giggle. I LOVE to snuggle with him all afternoon. He is the sweetest little boy. I LOVE seeing him learn and experience new things in our happy home. I am truly blessed with 4 of the most amazing little boys ever! I thank God every day for my angels.
This Mother's Day was great. Nick and Keag made me the sweetest cards. They made me cry. We got to spend the entire day at home together. We snuggled in the morning and played games the entire afternoon. LOVE my boys!

another appointment

Thursday April 30, 2015

Aaron is starting to do better. His seizures have stated to decrease with the increase in Onfi. So far he is tolerating the increase this time. Dr K (neuro) is increasing with a suspension of Onfi in hopes that he would tolerate it better. They have gone from 20-25 to now 5-6 a day. This is the drug of choice for LGS. I am starting to see the sparkle come back in his eyes. I have missed his sweet giggle and smile. He did start giving me kisses again the other day. I talked with neuro today and his sleep study came back very abnormal. No surprise there because he does not sleep well at night. He sleeps for a few hours and then is up for most of the night. Dr K wants his to see the ENT to see about the removal of his tonsils and adenoids. I am not sure that is an option due to his blood clotting issue. She said if they say no then they will need to treat the sleep apnea. I am hoping it is just with some extra O2. He did so well during the study. When he is O2 in the hospital he sleeps really well. I am not sure that I will get him to wear a mask at night. He does not like his face covered and I think the mask will scare him. Praying for a treatment that will work and that he will tolerate.

I LOVE this little boy. I am so excited to go to Disney World again this fall. With never know about Aaron from day to day so we are going to try and go at least once a year. He LOVES it there. All of the sounds and people make him laugh the entire time. Looking forward to making lots of happy memories. Can't wait for summer vacation!!! LOVE LOVE LOVE being a mom!!!!!

making great memories

Tuesday April 22, 2015

Its official. We just booked our vacation for Disney World!! I am so excited to make lots of wonderful memories again. The boys are going to be so excited when we tell them. We are going to wait to tell them until its closer to time to go with a special surprise.  I can't wait to see their faces. They have no idea because we just went last year and they think it will be a few years before we go again.!! We never know about Aaron. Sometimes it is day to day and even moment to moment with this precious angel. He LOVES Disney World. So we are going to try and go as often as possible. feeling extremely blessed and enjoying every moment with my family!! I am so excited to see the castle decorated for Christmas. And as an extra surprise for the boys we are taking grandma and grandpa, Uncle Zack, Aunt Stephanie and Arianna.

more labs

Monday April 13, 2015

Aaron is having more seizures again. We are once again increasing his Onfi. This is the medication that his body does not handle very well. We have increased it twice and both times have had to decrease it again. He has a lot more trouble maintaining his body temp, his heart rate is low and he is really lethargic. I did not want to increase this med. I begged them not too. Dr K (neuro ) said there isn't much else to do except start another med that has lots of side effects.  We are starting very low and increasing it very slowly. I am praying that we will be able to get to a beneficial dose this time.

I talked to Dr O (hematologist ) this morning. They finally got back the lab results. Aaron was low in factor 8. At very low levels this is called Hemophilia (10 or less) Thankfully Aaron was at 40. Normal is 50-100. This along with his Thrombocytopenia gives him a diagnosis of Von Willebrand Disease. He will have more labs to determine the exact type. The main treatment 9no cure) is the med DDAVP. The problem is Aaron already takes this medication for his Diabetes Insipidus (blood sodium). If we give him a higher dose he will not urinate and his sodium level will drop and he will crash and this would lead to a life or death emergecy for Aaron. I pray they determine the type they will figure out a  treatment.  I LOVE this crazy boy. Just praying and cherishing every second we spend together and as a family.

hello sunshie

Saturday April 9, 2015

We had a great weekend and enjoyed all of the warm weather and sunshine. We had a silly string fight and a picnic. The boys loved spraying everyone with silly string. They laughed and squealed the whole time. Aaron and Taevon loved hearing them laugh and run around the backyard. I enjoy the time we spend as a family so much.

We cooked hotdogs on the grill and had a picnic. The boys loved being able to eat outside. We are all looking forward to summer vacation.

another sleep study

Tuesday-Wednesday April 7-8, 2015

Aaron had his sleep study last night. I was so worried about how he would do with everything. I did not want him to get so stressed he would not be able to sleep and I really wanted them to be able to get all of the info they needed in one night. Boy was I worng. He did great. He slept ALL NIGHT!! Thats right ALL NIGHT! I could not believe how well he slept. He moved a few times but slept until 5am!! Why can't he do that at home. He NEVER sleeps all night unless he is sick. I hope they got everythig that they needed. I am looking forward to talking with Dr K ( neuro) about the results. I don't think he has Sleep Apnea. I can answer no to all of the questions they asked for Keag for Aaron. I am hoping she has some other ideas to help him sleep all night and hopefully decrease the amount of seizures

These were taken before they put in the nasal cannula. That didn't even bother him like it usually does. I hope they can help him sleep better at night so he doesnt need to sleep so much during the day. Love this sweet little boy!

ENT appointment

Tuesday April 7, 2015

Keag saw Dr R today to talk about getting his tonsils and adenoids removed. I was dreading this appointment. We talked about the results of his Sleep Study and he examined Keagan. He asked a bunch of questions. Did he snore? Did he jerk awake? Does he sleep walk, have night terrors? Thankfully I was able to answer "NO" to all of these. Dr R said he DOES NOT need to have them removed. He said his tonsils were not enlarged or obstructing his breathing. WHOO HOO!!!!!
He said he will send a letter to Dr T (neuro) and Dr C (pediatrician) that maybe working on his quality of sleep would help instead. I was so happy when he said no surgery!!