Girls' Doctor Appointments

   When we went to Amanda's neurologist appointment, I was curious to find out what stimulant medication he would want to try her on.  I was a little frustrated and maybe a little upset that he DID NOT give us a script for a stimulant.  He told me that he wanted to wait for reports from School before deciding IF she needed on a stimulant at all.  He obviously DID NOT read the reports from her psychologist.  So, I guess we will just wait it out a couple months.  But, I won't let Mandi's academics suffer either.  He is keeping her on the same dose of Keppra; since she seems to be doing very well on it.

    Both girls had their Echos done on the same day. Rebekah was 18 lbs. 12 oz. and 29 inches at her 18 month well check and cardiologist appointments.  Bekah's Echo went very well; just the slightest change.  And, she got new doses of 1 ml Lasix a day and 2 ml of Captopril 3 times a day.

    Mandi's went OK as well, but  Dr. wanted to have a Heart CT ordered.  She will have to get an I.V. because he wanted to do it with and  without the dye contrast.  That is scheduled for Tuesday, 8-9-11.  I hope it isn't to traumatic for Mandi with her anxiety.  But Mommy will be right there with her and of course she will be entitled to a new gift as well.

Some New Issues

We have been noticing some new behaviors from Amanda the last few months.  And not just us but her teachers at school and my parents.  She would have these "staring spells"; so my Mom suggested it wouldn't be a bad idea to see a neurologist.  When we went to the doctor and discribed her behavior, he seemed concerned and from there set up to have an EEG and MRI performed.  He also referred us to a psychologist for our ADHD concerns. 

Amanda had her MRI on April 25th and her EEG on May 5th.  She was very good on both accounts; I was very proud.  And, we went back to find out the results on May 9th. She does have seizures and we got her onto a medication called "Keppra" twice a day.  I feel like "oh great something new" but at the very least we caught the seizures before they were worse.

We had her psychology testing done May 17th and May 24th., but had to wait for the results until June 23rd.  She told us Amanda is just below average intellegence so that was good.  She said with the high stress level in the family, she diagnosed Amanda with Adjustment Disorder which is the cause of her Anxiety Issues.  IF they don't go away in a few years then she will be diagnosed with Anxiety Disorder.  At this point, I am not sure she will.  She gets anxiety in public places.  She is also diagnosed with Cognitive Disorder which is treated exactly like ADHD but with her having seizures, she didn't classify it as ADHD. She gave us some book titles to help with parenting ADHD kids. She is leaving the medication choice up to her neurologist for the seizure and stimulant so they don't have adverse effects to one another.  We won't go back to discuss the medications until July 27th.

6 Month Hiatus

Well,  A.J. got about 200 miles away, to Mayo Clinic in MN.  He got a phone call saying there were issues with the insurance and his condition wasn't "unique" enough.?? What did "THAT" mean? So he turned around and came home.  I was happy that he was coming home But also had prepared myself and the kids that he would be gone.  We thought Everything was Good to Go, apparently not..  This was in November 2010.  There were questions about "WHAT" exactly  needed to be fixed.  And, there were 3 different opinions from 3 different Doctors.  And, Should AJ go back to Work OR Stay Home?

 He tried to go back to work and after 2 days back he ended up in the hospital for a week.  After getting released, he was ordered to have oxygen at night for sleeping or as needed and to Stay Home until Fixed and Recovered.  By this time, he was Off of Work for about 6 weeks.

After 4 months at Home and feeling HORRIBLE every day; he had his Open Heart Surgery Scheduled for March 14, 2011.  Due to that being a Monday, he would have to go to MN the previous Wednesday, 3-9-11 for Pre-Op testing.  So, I was forced to prepare myself and my kids to say Goodbye a second time to A.J.

 He did great in the hospital and was HOME by Friday night, 3-18-11;  4 days in the hospital. 
He is  healthy and has the best Energy Level ( more than Me).  He feels like a NEW MAN.  And, he does feel and look Happier.

Family Motto

I just came up with a new motto or saying  that represents my family pretty well. 

IT IS WHAT IT IS!!!  OR   IIWII

DiGeorge Syndrome and all the symptoms that is associated with it are so complex and we are continuing to discover new symptoms with the kids.  We cannot CHANGE the fact the DiGeorge is a part of our every day lives so it is what it is and we can just conquer all the issues that arise together as a family and together we can find the best solution for anything and everything.

What do you all think??

Updates on Everyone

Rebekah is doing good.  She will be 9 months old on the 18th and is about 16 lbs.  She had an Echo cardiogram done a month ago and her Leaks are a little bit bigger but nothing to be concerned with at this time.  In fact, we get to wait until January for her next Cardiology appointment. YAY!!  She is still on her medicines-- Lasix and Captopril.  She doing great eating her baby food and still sleeping good at night. She is still my happy, smiley little Angel.

 We have noticed some speech delays, developmental delays and ADHD behaviors with Lucas  As a result,Lucas has started preschool with an Early Childhood program catered to his needs; Speech therapy, etc.   He goes 5 days a week and rides a school bus.  He really enjoys it.  And, is doing well in this new school setting.

We got a call from Amanda's teacher a month ago with some concerns.  Amanda was having some academic delays and  bad behaviors started showing up so we took her to the doctor and got her labs drawn for Di George and She tested Positive for Di George and we have her an appointment in January for a neurologist and psychiatrist. 

My Husband A.J. has his Surgery date set for November 12th, 2010.  We are hoping he will be back home by Thanksgiving but he will be out of work until 2011.  He has been having more symptoms associated with Tetralogy of Fallot but hopefully he will feel much better in a few weeks after surgery.

I am doing okay.  I am on medicines for hypertension and antidepressant to relieve some Stress that I have with everyone's different needs.   I need to Stay Strong !!!!!

Husband A.J.'s Update

My husband A.J. has Tetralogy of Fallot--CHD and so he had a routine cardiology appointment a couple months ago.  He was feeling extremely wore down but he wasn't thinking anything about it having to do with his TOF.  The Echo cardiogram showed that his Leak in his Pulmonary Valve got considerably worse and so his Cardiologist wanted to perform another type of ECHO called a Trans esophageal echo cardiogram  and that showed that his Pulmonary Valve would need replaced, the 2 small leaks around his patch would need stitched closed, his Right Ventricule is enlarged and would need to be surgically re sculpted, and a separation between the 2 Upper Chambers of his Heart would be stitched closed.  And, it wouldn't be able to be performed in our hometown or anywhere close to Kansas but up in Minnesota at the Mayo Clinic.  There is no medications that will help with his chronic fatigue until Surgery is done.

 I am not going to be able to be there for my husband's Surgery and Recovery and it saddens me deeply but my 3 children need me also and it would complicate  matters if I uprooted them and left when I know I will need to be away from Amanda and Lucas when Rebekah needs her next surgery. A.J. agrees that I need to stay with the kids and says he'll recover as quickly as possible. My In laws will be with A.J. but I wish I could be in 2 places at once.

The next step for A.J. is a heart catherization.  That has not been scheduled yet.  We are hoping he'll be able to have his Open Heart Surgery before the end of the year.  That would make 2 open heart surgeries in 2010 for my family. 

Please send prayers for the 5 members of MY Family; that 2010 will end with Everyone Healthy

Rebekah-- 6 Months Post-Surgery and 7 months old Update

It is hard to believe that it has already been 6 months since her first surgery. And she is 7 months old tomorrow.  When we left the hospital she was on the medications Zantac and Lasix twice a day. And she had monthly cardiology appointments. She no longer needs the Zantac and her cardiologist cut back to Lasix once a day.  She has 3 small leaks now so she was put on Captopril 3 times a day but also got to lengthen her time in between cardiology appointments to every 2 months which she has another one next week.  Her incision looks great as well.


She is 25 inches long and is 13 lbs. 7.5 oz.  She sleeps very good at night about 10 pm until 6 am.; nap times are a different story. We call her our little "tumbleweed" because she loves moving all around on the floor; rolling and scooting.  She is a fast little mover.  We are struggling a little bit with baby food but I am sure that will get better soon. She is a very happy sweet baby that smiles all day.  She adores her Big Brother and Big Sister and has everyone wrapped around her little finger. All in All, Bekah couldn't be doing any better. Our Prayers have been answered and our prayers are continuing that she stays healthy so the next surgery is as far away as possible.