September Newsletter and Updates

Dear friends,

I apologize for not writing for so many months. I have not sent a newsletter in quite some time. Our family has just been inundated with intense struggles both financially and medically the last several months.

April
Joseph underwent his cardiac catheterization. Joseph had local anesthesia and heavy sedation during the procedure. During the procedure, Joseph had trouble maintaining adequate oxygen levels in his blood which fell down to 76 percent which is extremely low. He required 100 percent oxygen, but they were able to stabilize him. This made Scott and I nervous because we already know from his medical records that Joseph coded once in his life where they had to use extreme measures to bring him back. This complication during his heart cath was unexpected. Fortunately, they were able to stabilize Joseph and no ventilator was required. The doctors were able to complete the procedure, and had unexpected findings. Joseph’s heart is already compromised being enlarged on one side and atrophied on the other. The doctors found and diagnosed Joseph with pulmonary hypertension along with all the other problems he is already struggling with. Joseph already struggles most days with chest pain, fatigue especially with activity and exertion and occasionally faint blue around his mouth. Now, he may be having difficulty breathing as well and not know how to accurately describe that to us. The doctors are not sure of the cause of the pulmonary hypertension, although he probably has had it for a while. Without knowing the exact cause, we suspect it may have been there since he was little when he had a lot of lung infections. Unfortunately, pulmonary hypertension can be progressive and fatal and can lead to heart failure and often leads to death within three years. Unfortunately, this has a huge financial impact on our family. The doctors are conferencing to formulate a plan and expect several procedures may be necessary to try and find the cause. If they can find the cause, that would help treatment. Soo, more procedures (probably a sleep study, another heart cath later to recheck his pressures, an ENT, pulmonary specialist etc.). The atrial double switch surgery that we were hoping Joseph could have would have extended his life from 5 years to about 50 to 60 years old, and now is on hold indefinitely because of this newest complication. We thought we had hurdled at least the major medical problems, and were on our way to things being better with a longer and better life for Joseph, and now we may have him for much shorter than we expected as his condition just keeps getting worse. Overall, he looks okay. Praise God he still is active. As little boys go, he likes to be in the midst of everything. He has such great spunk and a joy and a smile that truly warms your heart are gifts from God which help him through all this tough stuff. Joseph is healing from the procedure and up and around again. Praise God the doctors found it. Without the heart catheterization, we would not even have known until he was much worse. At least this way, the doctors can give him medication to help. We don’t have any previous measures from his open heart surgery in October to compare, because LPCH didn’t do a heart cath or get those kinds of measurements. Looking back, I believe God had angels in his plan for us. It was a Godsend to be at Children’s Hospital LA where they could find the pulmonary hypertension. Praise God Joseph DID get the pacemaker in October last year when he did to help his little heart keep going, and especially since his body depends on that pacemaker more and more. It just breaks my heart to see though how it does limit him and cause him pain. Pain that I can’t fix or heal or take away. I can only hug him and tell him how much I love him and do what we can.

Michael then got some really serious headaches so badly that he was throwing up several times during the day while we were waiting for Joseph during his procedure and recovery. They have been coming pretty constant. Tylenol helps take the edge off, but we need to get him to another neurologist for a new consult to try and find the cause. The previous neurologist did not really give us any answers for his headaches. Lord, help us.

May - June
We had a lot of birthdays and holidays during April, May and June. Most of us actually had a birthday. Michael turned 13. Gabriela turned 11. Joseph turned 8. Joshua turned 6. And Shawna was 3 in February. Our 3 dogs are healthy as ever, Chip, Apricot and Kojo.

July
All the children were approved for Medi-Cal, and Joseph and Michael were also approved for CCS. PRAISE GOD for medical coverage for the kids! Michael was in the emergency room with an injured knee, and laid up in a half cast for a week. Inititally, they thought Michael had fractured his knee as a result of the tendon pulling a piece of bone off his knee. Later, it appears that was not the case. Michael is up and walking around again. Within just days of Michael being injured, Gabriela fell and broke the growth plate in her wrist while roller skating and also ended up in the emergency room at St. Joseph’s Hospital. The emergency department referred us to orthopedics at CHOC, who subsequently refused to treat us because we live in Riverside. That just didn’t make sense after the many specialties who already see two of our kids. Utterly frustrated, I called CHLA who stated they could not help and referred us to Loma Linda. I left a message with Loma Linda and never received a call back. After leaving messages all over trying to find an orthopedist who would see our kids, Shriner’s told us they would gladly see both kids for their respective injuries and proceeded to treat them for free without charging us a penny!

August
Gabriela’s wrist healed, and she was very happy to get her cast off! Michael was in the hospital during the month of August for a week or so. We took Michael to the emergency room after recording extremely high blood pressures up to 167 over 120, severe headaches off the scale (10 out of 10 on a 1 to 10 scale for sure) with confusion and vomiting. Michael was admitted to Children’s Hospital of Orange County. During the week at the hospital, Michael was on IV medication for high blood pressure as well as IV steroids and medication by mouth to prevent seizures, vomiting, and stroke. Michael’s labs show that he has a great deal of inflammation in his body. The endocrinologist also increased his thyroid medication. The week was so difficult. Tuesday, Michael was completely miserable and still rather sick. He was throwing up on and off all day. His blood pressures were still quite high with the top number (systolic) still as high as 158. Michael said his head felt like it was going to explode. The doctors put Michael on some medication and took him off others which he had been taking at home which I still don’t know the reasons why. After asking the doctors all week and even complaining before discharge. That was the most frustrating part. Uggh! Wednesday, Michael was feeling a little better and got up to go to the playroom. He had a kidney ultrasound, xray of his knee and hip due to pain, and an MRI of his brain with and without contrast. They also told us they planned on doing a kidney biopsy within the next month but could not get it scheduled during Michael’s stay. Michael had quite a lot of labs drawn during his hospital stay as well. We found out Michael was spilling a lot of protein and red blood cells in his urine, which is abnormal because there should be none. During his stay though, Michael had 3 days of absolutely no headaches, which was just magnificent. Waking up without a headache, going to sleep without a headache and 3 days of that is phenomenal, a miracle for sure. Michael has not been headache free for that long in many months and probably a couple of years, maybe longer. We PRAISE God for our miracle. I pray that his headache free state will continue. Michael was diagnosed with Lupus, Lupus Nephritis and Essential Hypertension. Essential (or Primary) Hypertension by its very diagnosis implies the cause is unknown, so I don’t know why the diagnosis was Primary Hypertension. It should have been Secondary Hypertension because the physicians told us his Hypertension was caused by the Lupus Nephritis and his kidneys which were not filtering the blood properly. The kidneys play a large role in controlling blood pressure. I will find the results of the kidney biopsy very interesting. Michael was discharged home on Friday August 21st seemingly doing okay with his blood pressure sort of under control but not solidly. It took a long time for the medication to kick in and take effect bringing his blood pressure down.

Over the weekend, Michael had abdominal pain and back pain and his blood pressures started going up again. Michael was again not feeling well with blood pressures up to 144 systolic (the top number). We called nephrology who stated they did not want to see us, increased his blood pressure medication and told us to call another doctor for the other symptoms. We called rheumatology who changed Michael medication for his stomach from Zantac to Prevacid, which has not really helped at all except at least it is a few less pills per day. Michael came home on a lot of medications for all these conditions. Over the week after he came home, Michael’s blood pressure has had to go up several times to keep it under control. Michael is having headaches again, just about every day now, although they seem to not go past a 5 / 10. Tylenol does not even really touch it though even taking it several times per day as prescribed. Michael is in pain most days. Michael has many follow-ups with many specialties in the upcoming months including rheumatology on Tuesday the 8th, and a kidney biopsy on the 11th where he will have to stay overnight one night. Michael is charming and compassionate. During his stay at the hospital, he was busy making gifts for everyone else our family and the children at the hospital included.

Having lots of experience waiting in waiting rooms and lobbies at hospital visits, during procedures and surgeries, I can see the need for improvements in services to families that frequent the hospitals. I would love to see a play area with places to climb where the healthy siblings of patients can come a play, yell, scream without the worry of disturbing the whole hospital. I would love to see a waiting area for parents and families with games, TV, movies (and not just whatever happens to be on), and activities for kids besides books and crayons. I would love to see places to eat besides a cafeteria with limited hours and not so great hospital food. Parents with siblings do not always get the choice of being there at ideal hours.

September
I am so excited. We finaaaaalllllly got a consult with a pulmonary specialist for our son, Joseph, who is 8 now. The doctor was very very nice and listened well. We told the doctor about Joseph’s diagnosis of Pulmonary Hypertension in April and that we had had no diagnostic testing or treating at all until the end of July, and even then the ONLY thing he has had is Revatio (Sildenafil). He still has episodes turning blue, and pain with breathing and chest pain nearly daily. Our son had the first pulmonary banding and a pacemaker put in during October 2008 for his heart defect d-TGA (where the pulmonary artery and aorta are backwards). He did NOT have a cardiac catheterization done before the surgery. He had all these same symptoms back then, except because of the language barrier with our son (still learning English) we did not realize he was having pain on breathing. The pulmonary specialist stated that he had all the signs but all those signs can be easily attributed to his heart defect. The cardiologists all thought it was from his heart defect including the cardiothoracic at Lucille Packard and the cardiologists at CHOC. Since no cardiac catheterization was done, it was not picked up. The pulmonary specialist states it is very likely that he has had pulmonary hypertension for quite a while because it takes a while for the pulmonary hypertension to get bad enough for it to cause cyanosis. Well, the pulmonary specialist stated he would request authorization for Joseph to be followed by pulmonary from CCS as well as request authorization for a pulse oximeter to begin evaluating his oxygen levels, during exercise, while he sleeps etc. After we establish how he is really doing when he gets blue, then we can request it from CCS with the ability to prove medical necessity for him to where oxygen. The pulmonary specialist states the best therapy we have for pulmonary hypertension is to make sure our son has adequate oxygen. Adequate oxygen levels can go a long way to helping the body and brain grown and develop properly. I am hoping this will help in his ability to learn and focus as well. It would be very interesting to find out how lack of oxygen affects children in school and if that in any way has contributed to his microcephaly. He also stated we would look to see what kind of pulmonary hypertension he has, responsive or nonresponsive, and that there were several things that can cause chest pain besides his cardiac defect and pulmonary hypertension, one being esophageal reflux. Finally, someone who knows what they are talking about. It is my personal opinion that with the many many birth defects he has from the fetal alcohol syndrome that it is just irresponsible doctoring to not rule out other diseases and illnesses that can cause the same symptoms. Praise God we are making progress. God is soooo good.

I will be very glad when Joseph finally receives a pulse oximeter to measure his oxygen levels during the day. We have found out through talking with many parents and people in the pulmonary hypertension arena that putting a child with that diagnosis on oxygen right away is commonly done even if that child is not having trouble to help resolve the pulmonary hypertension more quickly. We spoke with the specialists at Children’s Hospital of Los Angeles who confirmed this. It is incredibly frustrating when you know what your child needs and because of cost or the lack of a physician who will write a prescription are not able to get that.

Renal Biopsy
Michael was back in the hospital at Children’s Hospital of Orange County on Friday the 11th of September for a renal biopsy (biopsy of the kidney). He did remarkably well even with having to stay overnight. The kidney is very vascular and has a lot of veins and arteries and thus blood running through it; so, the overnight stay was for his own safety in case of bleeding. We won’t find out the results for another 2 weeks or so. The rheumatologist believes Michael has an aggressive form of kidney disease because of how his blood pressure has not responded well to the two different medications he is on. We anxiously wait for those results. Please continue to pray for Michael as we ourselves pray for him hear at home. Lupus has taken a toll on his body and even getting dressed is painful each day. Unfortunately, Michael is still having headaches. The good news is that with the blood pressure medication at least he has some headache free days. We just wish they were more often than less.

Our Dogs
Our poor dogs were so badly in need of a haircut (at least our two poodles) that I have started to learn how to cut their hair myself; I believe it does not look too bad if I do say so myself. I am sure they feel much better; their hair was quite long.

Answered Prayers
God heard the prayers of our children; God answered the prayers of our children. In our time of need, God has blessed us through our friends. Our water, electricity and trash our on and paid because of you, our friends. We have gas in our car, and the tags on our van are even registered and paid because of you, our friends. Thank you! God is good.

SSI
We are still waiting for approval of SSI for Michael and Joseph, although we are hopeful. We heard from the SSI worker today who was reviewing the documents and stated approval was likely, even though they were not done reviewing documents.

Coming Up – The End of September
September 26th, 2009 / Saturday:
Joseph Noah will have his Baptism finished. Joseph had an emergency Baptism last summer 2008 due to his anticipated open heart surgery and very worrisome heart condition with low heart rates in the 30’s and pauses 2.4 seconds between his heart beats. Since then, he received a pacemaker and at least has a steady heart rate now. Well, the baptism wasn’t “finished”, whatever that means. It definitely will be now; the priests have been wonderful.

Joshua John has not yet been Baptized, and will be Baptized the same day on September 26, 2009.

We expect a great outpouring of the Holy Spirit at the Baptism of our two sons on this day. If you would like more information about attending, please email me at academyofthepossible@gmail.com for more details.

September 29, 2009 / Tuesday:
Joseph is scheduled for his second cardiac catheterization this day. Because Joseph desaturated during the last heart cath (was not getting enough oxygen to breathe) down to 76 percent, he will have this done under general anesthesia. We found out that Joseph also had some pulmonary obstruction during the procedure, where he had difficulty breathing. The general anesthesia will help the doctors maintain a more stable airway and a more controlled environment; if something happens, the cardiothoracic surgeon and other specialists will be right there to help. The second heart cath is necessary for the doctors to determine accurately what the pressures are in Joseph’s heart and arteries in his lungs and to determine how his heart is doing since the pulmonary banding and how the arteries in his lungs are doing with the pulmonary hypertension since the start of the medication. We are praying for miracles that Joseph will have responded well and have really nice pressures. That would give us hope that Joseph may even be able to have the next surgery to repair his heart defect. We will keep praying and see!

Work
God is again so good to us. As many of you know both Scott and I are both looking for work. Scott may have some temporary seasonal work as a food sampler starting the end of October. I also have a lead on two promising jobs, one locally and one in San Jose. We won’t know for a couple weeks. Please pray the Lord leads and guides us as to where we will best be able to raise our family, answer our calling and serve our dear Lord.

Finances
In the meantime, the county denied us any help cash wise. They told us were not deprived enough, so we only receive help for food. Let’s see, no income, both of us out of work, 5 kids, 2 of them rather seriously ill, several of them special needs, no money for utilities, dmv, gas at home or for the car, behind in a now upside down mortgage, and medical bills through the roof. We thank God every day for our lovely children, all of whom were primarily healthy as far as we knew at the time of adoption. God has taken us on this journey of surprises. As most parents do, we are aware that sometimes life happens, sometimes kids get really sick, and sometimes life is just tough all over. Tough times happen, illness and tragedy strikes, and things come up with children we love regardless of how they came into our lives and into our hearts. We love every one of them so very much. We thank God every day for the money we get from recycling our cans and bottles to help with all the finances, and the Lord’s own faithful people who have been generous in financial gifts here and there, and the occasional dollar we make at our yard sales in cleaning out and selling our own things. Yard sales sure can be a lot of work for not a whole lot of money. I am not complaining though; we are glad for every single dollar. Ecclesiastes says take any work because in Sheol it does not matter how much you have achieved or possessed or how much wisdom you had in this life (paraphrased). Very interesting, huh? All God’s faithful people have been our saving grace these past few months. Scott has been out of work for two years, and I have been out of work now for quite a while myself, which makes it really very tough. I can only pray that our testimony helps inspire you as you read this. If we can grow in strength and survive this with God’s help, you will too gain strength in your own struggles and come out a better person for it with God’s help in your own life.

Dispelling Myths and Answering Questions
We have had some people express some amazing comments and questions to us. I thought this would be a great opportunity to educate and dispel these few myths.

No, not all Californians have a pot of gold at the end of the rainbow; we do all have God though.

No, not all Californians live in dream homes with perfect weather; even in California the climate changes in different areas. Some houses are better than others. Not everything is at it seems on TV. Many Californians live in older homes just like us that have problems.

Yes, most of California is sunny; but, sunny does not always mean comfortable, cool and breezy. The desert can be quite hot, especially with no proper air conditioning. Many people, especially during this economic recession, cannot afford it even if they did have working AC. The winters can be quite chilly in parts with of California as well.

No, not all Californias have houses that are worth a lot of money; in fact, many Californias don’t even own a house or if they do they are small and very old.

No, not every California has a job that pays all the bills; California has the nearly the highest unemployment rate in America (only 2 other states top California). Moving can be a hard thing without the resources to do it and is not possible for many people in California for many reasons.

No, not all mortgages are right side up; with the current market, multitudes of Californias have lost huge amounts of equity in their homes through no fault of their own and are unable to refinance even with all the government programs. I don’t think the system works very well. I can only do my part to help as the Lord calls and leads me.

No, not all adoptive parents know every medical condition about the child they are adopting; just as in accepting the responsibility of parenting a biological child, parents who adopt a child cannot know everything that will happen nor can they plan for every problem or illness that may come up in the future. We still love our children with the depths of our hearts and want the best for them.

Yes, adoptive parents accept the child they adopt unconditionally with love regardless of what the future may hold as do biological parents. Even with a lot of savings, a good paying job, and the best financial planning, tragedy happens. Children get sick; we cannot control this.

Did we know our children would get so incredibly sick? No, of course not.

Did we know they had a medical history? Sure. Everyone has some medical history, but that doesn’t mean they will get seriously ill anytime in the future. Nor does it mean we know everything. Many people with medical histories lead good long lives. It does not take much for any family to deplete their savings in times of tragedy. Just think about the many families who are diagnosed with cancer and chronic disease every year. For those of you who deal with chronic illness or disease of any type on a day to day basis for the last umpteen days, months, or even years, I honor you here for your tenacity, commitment and your struggle to live and to those you love.

Adoption does not guarantee a healthy child. Having planned savings and equity, does not guarantee a stable tomorrow. Even the stock market severely crashed affecting millions on Black Tuesday in 1929. Also, a day which will be forever etched in our memories, September 11, when thousands of lives were changed forever and lost in just moments. We just don’t know what tomorrow brings.

Every child matters, and every child has a story.
Praise you Lord for the many divine miracles you have placed in our lives this year!
Thank you Lord for holding us in the palm of your hands and never letting go!

Richardson Studios and Academy of the Possible
Our business, Richardson Studios has been extremely slow in part because of the lack of funds necessary to grow it, market and raise customers and in part due to the economy being slow. We have also not really gotten Academy of the Possible off the ground. Although we have officially started the school, we have had obstacles in the way. All in God’s good timing as we grow as individuals and learn more about managing a business, marketing and raising funds.

We are looking for leaders in our community interested in volunteer positions. These are all volunteer positions with no paid benefits at this time. There are no benefits to these positions, and they are all home based. We are a lay Catholic Christian organization. If you know of anyone who may be interested in such an opportunity in a company with a big vision, please feel free to forward this email. We will be happy to talk.

Minimum requirements for all positions include
*email access and phone access,
*a Christian faith with a Christ-centered personal relationship with Jesus,
*a commitment to our vision and willingness to partner in prayer,
*basic computer proficiency (or the willingness to learn),
*ability to email and use MS Word (or the willingness to learn), and
*ability to attend monthly meetings (usually in the Riverside area).

We need volunteers for the following positions:

Accounting & Finance
*Experience and knowledge of tithing a plus
*Experience working with a debt-free organization a plus

Prayer Warriors
*Experience with laying on of hands and intercessory prayer

Grant Writing

Fundraising and Event Planning

Sales

Legal

Marketing and Promotion

Renewable Energies (solar, wind, etc)
*We are praying about our own utilities and ways to decrease the overhead and costs of running the school, hospital and medical facility. High costs and not enough income is the number one problem in hospitals. This is one way we are praying about decreasing overhead.

Medical Research
*Must be proficient in APA format and how to cite references properly
*Must know how to write scientific or medical articles or brochures
*Experience in the medical or nursing field a plus

Teachers
*Teaching credential for K-12 or Secondary Subject in good standing a plus, OR Experience as a homeschool teacher for a minimum of 2 years
*Experience with Special Needs children a plus but not required
*A Strong Desire to work with special needs children required
*Special Education certification a plus but not required
*Accepting all subjects including Bible and Prayers, Catholic Faith Formation / Catechism, Science, History, Geography, Language Arts / English, Math (all levels), Home Economics, Life Skills, Vocational Skills, Art, Music

Child Life Specialist
*Experience in an acute care setting

Hospitality / Greeter

Director of Nursing
*Bachelor’s Degree preferred
*Active license in good standing
*Acute Care experience required
*Pediatric experience a plus
*Experience with JCAHO required
*Experience with Magnet Accreditation a plus
*Experience supervising, training and teaching new staff
*Experience in an office, clinic, or home care setting a plus

Registered Nurse Supervisor / Manager
*Bachelor’s Degree preferred
*Active license in good standing
*Acute Care experience required
*Pediatric experience a plus
*Experience with JCAHO and Magnet Accreditation a plus
*Experience supervising, training and teaching new staff
*Experience in an office, clinic, or home care setting a plus

RN Clinical Educator
*CPR and First Aid certification required or willingness to obtain certification
*Child Care Health & Prevention certification required or willingness to obtain certification
*Acute Care experience required
*American Red Cross Instructor certification required or willingness to obtain
*Bachelor’s Degree preferred
*Active license in good standing
*Pediatric experience a plus
*Experience with JCAHO and Magnet Accreditation a plus
*Experience supervising, training and teaching new staff
*Prior experience as a Clinical Educator a plus but not required
*Strong desire to teach required
*Experience in an office, clinic, or home care setting a plus

Registered Nurse
*Bachelor’s Degree preferred
*Active license in good standing
*Acute Care experience required
*Experience in an office, clinic, or home care setting a plus
*Pediatric experience a plus

Physical Therapists
*Experience with Pediatrics a plus

Occupational Therapists

Speech Therapists
*Experience with Pediatrics a plus
*

Play Therapist

Art Therapist

General Contractor / Engineer

Medical Director
*Medical Doctor license in good standing required
*Experience with pediatrics required
*Minimum of 5 years experience in an acute care pediatric hospital required
*Master’s Degree Required
*Experience with clinical studies and research required
*Experience in private practice and / or working in a clinic setting required
*Experience supervising and training new staff and / or residents a plus

Medical Doctor
*Medical Doctor license in good standing required
*Accepting Volunteers for ALL specialties including but not limited to: rheumatology, neurology,
*Experience with pediatrics required
*Minimum of 5 years experience in an acute care pediatric hospital required
*Master’s Degree Required
*Experience with clinical studies and research a plus but not required
*Experience in private practice and / or working in a clinic setting required

Spiritual Director
*Experience leading healing services / liturgy
*Experience in the Gifts of the Spirit
*Experience leading others in their walk in the Catholic Christian faith
*Experience in prayer and the laying on of hands and use of Holy Oil

Pastoral Counselor
*Experience in Connecting Prayer and / or willingness to take a 3 month intensive Spiritual Growth and Maturity Series
*Master’s in Clinical Psychology or MFCC a plus

Priest
*Ordained Catholic priest

Music Director
*Experience leading worship required
*Ability to play a musical instrument or sing required
*Willingness to lead worship required

Worship Leader
*Experience leading worship required
*Ability to play a musical instrument or sing required
*Willingness to lead worship required

Sound & Audio Engineer
*Experience mixing / recording / audio at musical events and / or worship services

We love you all,
The Richardson’s
Scott, Jennifer, Michael, Gabriela, Joseph, Joshua, and Shawna

Email: academyofthepossible@gmail.com
Business Website: www.richardsonstudios.com
Store: www.shop.richardsonstudios.com
School Website: www.academyofthepossible.com
Blog: www.richardsonstudios.blogspot.com