new neurologist

Monday June 30, 2014

Aaron had his appointment with his new neuro today. She was a little concerned about his level of consciousness. She wrote us a script for labs (to check levels of Vimpat and Keppra) and another EEG. We will get his labs done Wed morning before Tae's aqua therapy and his EEG is scheduled for July 11th. We talked about his meds making him very sleepy and the fact that he does not sleep very well at night. I usually try and schedule all of his appointments before 10 am but I couldn't get an early appointment this time.

I am so tired of getting additional referrals and appointments. I am exhausted and just want to have a little break from all of these appointments and new issues. Today I am feeling defeated. I want to just pick up and go on a family vacation on the spur of the moment. I don't want to plan and plan and make sure I have enough meds, formula, feeding tubes, syringes, ER rescue meds, Drs numbers, extra feeding pump, suction machine, a list of the closest hospitals.....I want my kids to experience all of the fun things and make all of the great family memories....tomorrow will be better...my kids are happy and we have made lots of memories together as a family. As always I will continue to plan and plan so we can go as a family. Just a trip to the zoo I pack so much stuff it looks like we will be gone for a few days. But with my kiddos I never know...
Even with all of the extra planning it ends up being all worth it!

another appointment

Monday June 23, 2014

Aaron saw Dr C this morning. It was a good appointment. He thought Aaron looked very good. He will see him again in 2 months. He lost a little more weight and we talked about his seizures and his temp. He is controlling his temp a little better but it is still an issue. Right now we have very good control of his seizures and I am very thankful for that. He wants to keep his feeds the same but might adjust it in the future depending on his overall health. I am so thankful for the amazing group of Drs I have taking care of Aaron.   He is the healthiest that he has been in a few years. I cherish every moment I get to spend with this sweet little boy.

Cyclone

We bought a Radio Flyer Cyclone that was recommended by Aaron's PT.  He uses it in therapy and he really enjoys the motion. The boys LOVE it. Keagan got on and he just took off. He squealed the entire time. Nicholas loved going in circles. I feel so incredible blessed to be able to stay home with the boys. I love the time we spend together as a family. I LOVE being a mom!

block party

Saturday June 21, 2014

The boys were so excited to go to the block party today. They had inflatables, a dunk tank and of course fireworks. The boys loved the dunk tank. Nicholas did it on his first try. We were able to see all of the fireworks from our driveway. We really enjoyed the time we got to spend together.

Taevon is 7

Saturday June 21, 2014

HAPPY BIRTHDAY TAEVON!!! I can't believe you are 7 years old today. You are such a special little boy and I am so lucky to be your mom. I remember the first time I saw you and I couldn't wait to hold you. You are the sweetest little boy and your smile melts my heart. I LOVE rocking in the chair with you all afternoon. You have the sweetest giggle. I can't believe how much you have changed in such a short time. You are truly a miracle!!

We are celebrating your birthday with a Veggie Tale party. I can't wait to see you play with your balloons!!

                                                   HAPPY BIRTHDAY MY SWEET TAE

referrals

Thursday / Friday June 19 &20, 2014

Keagan and Taevon saw Dr C this week. Keagan is still complaining of headaches and not feeling well. He had some labs done and we are being referred to a Neurologist at Riley Hospital.

Taevon went for his 7 year check up. We left the appointment with 2 referrals. One for Urology and the 2nd for Endocrinology.  Thankfully the Urologist form Riley does clinics here at the Pediatric Outpatient Clinic. Taevon will most likely have surgery and the Endo will deal with his Precocious Puberty. I never thought a well child check up would result in multiple referrals (except for maybe Aaron) My schedule is crazy already and now I have added 3 new Drs. Thankfully only one at Riley. Hopefully none of these issues will be long term. But with my kiddos who knows! I have learned never take a moment with a loved one for granted. So we will make these new appointments and deal with these new issues and thank God for each moment we get to spend together.

I am exhausted and am ready to go back to Disney now! Feb seems so far away!

last day of school

June 5, 2014

Today is the last day of school! I am so excited for summer vacation.  I can't believe that Nicholas is going to be in the 3rd grade. Time has gone so fast. He got accepted into the PEAK program for next year. He is looking forward to all of the research he will get to do in this program. We have lots of fun things planned for this summer and I can't wait to spend all day with the boys.

our life with 4 boys...3 of them with special needs

I am the mom to 4 amazing little angels. Three with special needs. I feel so lucky to be their mommy.


Nicholas is our oldest. He is 8 and will be in the 3rd grade. He is the greatest big brother. He is a typical child but does deal with a life threatening nut allergy.

Taevon is our oldest 6 year old. (by just a few months). We were lucky enough to be chosen as his forever family when he was 4 years old. ( July 2012) He is a survivor of Shaken Baby Syndrome. As a result of his abuse he has been diagnosed with Spastic Quadriplegic Cerebral Palsy, Epilepsy, high blood pressure, Microcephaly, scoliosis, Developmental delays, visual impairment, has a feeding tube, and is non verbal. He takes 5 meds twice a day and 1 med 3 times a day. He is the sweetest little boy He loves to be held and his smile melts my heart. He receives OT, PT and Speech. He is currently being home schooled due to coming home with a broken leg. Since no adult was able to tell me what happened we felt it was best for him to be at home where he is safe.

Keagan is our middle 6 year old. (a month older than our youngest) We were blessed when he joined our family at age 2. (September 2009) In two short years he dealt with physical abuse and neglect. He was moved from home to home and we were told he was showing signs of Reactive Attachment Disorder. Keag is the the funniest little boy. He is a loving and caring little boy and gives the best hugs. There are no signs of this disorder. He is dealing with Fetal Alcohol Syndrome and the effects of a stroke. He takes 1 med twice a day. We are also working to find out about a language and or processing disorder. We continue to work on his behaviors and are dealing with migraine headaches. He received speech and OT services until he was 4. He will be starting Kindergarten in the fall and he is very excited to ride the school bus.

Aaron is our youngest 6 year old by a month. We were overjoyed when he joined our family at the age of two. ( Nov 2009) Aaron has the most challenges. He was born addicted to meth and cocaine. He has Septo Optic Dysplasia which has left him blind, and diagnosed with Panhypopituitarism, Congenital Adrenal Hyperpalsia, Diabetes Insipidus, Hypoglycemia, low heart rate, and Global Developmental delays. He is nonverbal but is able to make his needs known!  He has a cyst taking up most of his frontal lobe. He is also missing the corpus pedicullum and has hypoplasia of the corpus callosum. He was recently diagnosed with Lennox Gastaut Syndrome ( a rare and debilitating seizure disorder) that has caused some setbacks. He takes 8 meds twice a day. Aaron now has a feeding tube and no longer pulls up to furniture or takes steps. He has required numerous hospital stays and we have had some close calls with our sweet angel. He receives PT right now and is making some progress. I cherish every second with this sweet angel.

Although my schedule is crazy and I am lacking sleep I have never been happier. I am truly amazed at all that I have learned form these amazing little boys. Nicholas has taught me to love deeper and laugh harder, Taevon has taught me to just breathe and enjoy the little things. Keagan has taught me to never give up and Aaron has taught me not to take a second for granted. My house may always be scattered with toys and therapy equipment, my laundry pile may never seem to go down, the van will probably be "almost out of gas" daily,  I will always do "MY" things ( like grocery shopping, ironing, cleaning and showering) after the kids are asleep, our time alone may be on the patio while my husband grills some hotdogs at 9 pm but I wouldn't change a thing.  Sometimes it is crazy and I am exhausted but we make it work. The boys are happy and that is all that matters. They are only young once, I only have this one time to make memories and to make the most of our time together. I never want to take a moment for granted.

 Even though I LOVE my life sometimes I do feel on the outside. I don't really know anyone else with special kids. Not everyone understands our lives or what we deal with on a daily basis. The boys average 6-7 dr appointments a month and three therapy appointments a week plus the after school activities, sports practices and games makes for a crazy schedule. I feel like I am always on the go and look forward to the days we are able to relax at home. I am struggling with the thought of in home nursing care. I am not a very trusting person and the thought of letting someone else do the meds for the boys is enough to send me over the edge. I do it all by myself. Sometimes I feel overwhelmed and it would be nice to have some help but in the end it is all about trust. It is hard to wake up in the morning and the first thought is do I hear Aaron? The initial feeling of fear as I open his door in the morning and he is quiet. That feeling when I see Taevon and he seems to be staring a little too long. Is he having a seizure how long has it been going on? And there is Keagan. I worry about him in school. He is so far behind and he tries so hard but it is very difficult for him. Will he make it in a typical classroom with all of the distractions? My sweet Nick. How hard it must be to have 3 brothers with unique needs. He is such a great kid and seems very well adjusted. I just never want him to feel lost in the all the organized chaos. I am so lucky because he is so interested in anything medical. He loves going to all of the appointments and learning about all of their diagnosis. The techs are always so nice to him and explain everything. One tech even let him help put on Aaron's leads for his EKG. Sometimes it would be nice to have a friend that truly understands the demands of my life. Packing up the kids to go to the park is like packing for a vacation :) With the wheelchairs, feeding pumps, suction machine and rescue meds, diapers, and extra clothes the van always looks like we are going away for days!! Even with all of the things going on I feel so blessed that these 4 little boys call me mommy. I look forward to seeing what else God has in store for our lives. He has given me more than I could have ever dreamed of for myself, and all in His perfect timing. I am truly blessed.

May 2014!!  God is amazing! A year ago I never thought this would be possible! A family vacation with a healthy and happy Aaron!

the procedure

Monday June 9, 2014

Aaron had to be at outpatient surgery at 9am. His procedure was at 10:30am. We checked in and I was so nervous. All I could think of was all the other times we have been in the hospital. Aaron has been doing so well and I really didn't want him to have anesthesia. They called him back and we started with all of the questions about his medical history. I talked with the anesthesiologist (Dr Hudson) and she was very reassuring considering his history and past complications. They finally got the leads to read and they showed sinus arrhythmia. Dr H didn't look very happy when she was watching the monitor which added to my fear. They came and took my baby. I didn't want him to go. I kissed him and told him I loved him and watched them take him away. To hand over my sweet angel is one of the hardest things I have done, and I have had to do it numerous times. To trust him in the care of others is so difficult.

Dr M called me back and said he changed the button and everything went well. I was so relieved. He sent me back to the waiting room to wait for the nurse. I got nervous as I walked to my seat. I remember last time the Dr told me everything was fine. I returned to the waiting room and waited a long time for a nurse. He was having problems. His heart rate was crazy and he was needing lots of oxygen. They were doing an X-ray because they thought he had aspirated. Luckily I was able to go back and the anesthesiologist was still with him. She said he did well and was still doing well. His vitals looked good. I was so thankful.

He had some trouble waking up but he did great. We were able to go home after a few hours and he was in a good mood after a nap. So thankful!!

LOVE this sweet angel!!!

Aaron's GI appointment

Wednesday June 4, 2014

Aaron saw Dr M today to get his GI button changed. It didn't happen. Dr M tried very hard to get it out in the office, but it just didnlt work. So now he has to be put under with general anesthesia on Monday June 9th. Aaron does not do well with anesthesia. The last few times his heart rate is very low and irregular, his sats are low and he requires oxygen and he is slow to wake. I was hoping and praying that he would be able to change it in the office. I am so nervous for him to be put to sleep. I need to call his endo and get orders for his Solu Cortef during the procedure and find out his stress dose schedule. I don't want this to happen...

our last day

Friday May 16, 2014

We spent our last morning eating breakfast at Ohana. The boys loved seeing all of the characters.

We had a great vacation. Aaron did great and Tae started feeling better after a few days. Nick and Keagan had the best time and I am so glad they got to spend time with their grandma and papa. We made lots of great memories and we are already thinking about our next visit.

Magic Kingdom 2

Thursday May

Today was my favorite day. We went back to Magic Kingdom. I loved being able to go in the morning as a family.

After taking family pictures we were off to Fantasyland. I got to ride Its a Small World and the Teacups with Nick and Keag. It was so much fun. I loved seeing thier faces on the Teacups. Keag loved the ride so much he and I rode it a few more times together. He LOVED going fast!!

The boys got to see Alice and the White Rabbit and we took some more pictures before nap time.

The boys had a great afternoon with grandma. They rode all of their favorite rides and saw lots of characters.

Keagan couldn't stop talking about riding Splash Mountain with grandma. The boys had such a great time.

Grandma and papa watched Aaron and Taevon after I put them to bed so I could go to the park with the boys again. We had so much fun. We rode Splash Mountain and Keagan kept his hands in the air. Keag and I rode Big Thunder Mountain. He squealed the entire time. I am so thankful for being able to spend time with the boys in my favorite park.  We saw the fireworks and they loved the castle at night.