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!
Monday, June 30, 2014
Wednesday, June 25, 2014
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.
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.
Saturday, June 21, 2014
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
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!!
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!
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!
Friday, June 20, 2014
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.
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.
Subscribe to:
Posts (Atom)