The Power of God

Michael's hemoglobin (Hg) has been slowly increasing since Christmas, so he is out of the woods for now.

Before Christmas we had a scary call when hematology called letting us know that Michael's hemoglobin was significantly low possibly needing a blood transfusion. We were worried about another hospitalization over Christmas. After talking with both hematology and rhematology, we found out Michael should not receive a blood transfusion unless it is necessary to save his life. The reason is that Michael is a difficult match because of the many antibodies he has in his blood stream; this puts him at a higher risk for a transfusion reaction. If Michael received blood and had a transfusion reaction and later needed a kidney transplant, it would increase difficulty matching him for a kidney as well as increase the risk of rejection and make it much more difficult. Because Michael is still so young at 13 with already significant problems in his kidneys, any treatment as significant as a kidney transplant needs to be saved in case he really needs it later.

This means that Michael will have to live with the anemia unless it gets really bad. It is a matter of weighing the risks and balancing what he needs and what medical conditions are more manageable. Functioning kidneys are really important. Without functioning kidneys, Michael would have to be on regular dialysis. Dialysis on a possibly biweekly to daily basis is more disruptive than living with chronic anemia. Michael's body makes antibodies that attack his red blood cells and destroy them faster than his body can make them as well as antibodies against his red blood cells and platelets, so anemia and its affects is something he lives with daily.

Autoimmune Hemolytic Anemia can make a person feel fatigued, tired and even exhausted because there are not enough red blood cells to get oxygen to the body making your heart work harder to get blood where it needs to go. Other symptoms can include shortness of breath, dizziness (when standing up), headache, pale nail beds or gums, chest pain, and even cold hands or feet and pale skin. If the heart has to work too hard, arrhythmias, an enlarged heart, heart murmers and even heart failure can result. When anemia is really severe, some people will look yellow because of the red blood cells that release hemoglobin into the blood when those cells die. Pain in the abdominal area, an enlarged spleen (which fights off infections and filters the blood from dead or damaged cells), and gallstones can also occur which can be very painful.

A wheelchair is now a necessity to help Michael conserve his strength, to help Michael become more independent (especially as a teenager), to allow Michael to sit and rest when he needs to and still be able to get out and about. I have been struggling for so many months now to get Michael a wheelchair because we cannot afford it that I have been praying just for something other than our stroller (which he is clearly to big for). At Michael's physical therapy, I was very amazed to hear the therapist is trying to get Michael an electric wheelchair (not just a manuel one). I would love it if Michael could manuever himself around the grocery store or mall without me having to push him. It certainly would make getting out and going places easier for him instead of feeling limited like he is right now about where he could go. That would be a dream for Michael that until today we had not even thought of or dreamed of. Please keep this in your prayers for him.

Michael desperately wants to feel strong, feel independent, and to be capable on his own without mom's help as every teenager does. For him, it clearly is much more of a struggle with things that we take for granted like opening a can of food and walking down the aisle at Target. Even opening a can of soda causes pain in Michael's fingers, and Michael smiled when we were able to give him his own small plastic Tupperware soda can opener tool that lifts the tab up for him. He feels like a baby when he can't and smiles often to cover up the pain, fatigue and disappointment he feels. Michael tries hard to be strong and will often pretend he is fine when he feels lousy. I'm his mom though, and I can tell. We are trying hard to rally for the services and things that he needs and find creative ways to help Michael, and pray for things like a shower chair and rails to help him in and out of the tub without falling (which has happened). I wish we had a bigger house with rails and space for Michael to move around where we didn't have to worry so much about falling and hitting furniture like with his seizures. I just don't want Michael to get hurt again, especially if there was a way to avoid it; the means is the biggest problem, which we don't have unfortunately.

The truth is Michael has so many diseases and illnesses that his life is at risk every single day. Every day with Michael is a gift from God. Every day that Michael feels well enough to walk is a miracle. Every day with Michael himself is a miracle that he is still here for God's very special purpose. As we just completed Michael's fourth (4th) month of chemotherapy, Michael is a testament to the power of God to help us overcome amazing challenges and obstacles in our life.

God bless you,
Jennifer Richardson RN
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Us to the Lord:
"Lord, let Your Mercy be on us, as we place our trust in You." Psalm 33

Our Lord to us:
"I am with you always until the end of the age." Mt 28:20

A Prayer Request

Joseph has been having headaches since his surgery 2 months ago in November. We have seen a slight decrease in his skills at school (things he had mastered and now struggles with again). The cardiologist states this is a cause for concern because sometimes the body can make blood clots at the sight of the patch, which if they break loose can send blood clots to the brain causing a stroke. He has been referred to neurology, but the neurology refuses to accept the CCS authorization issued to the Team Centered Cardiology Care at CHOC. CCS won't authorize a new evaluation because an authorization already exists. We are now trying to get him into a different neurologist through Medi-Cal. Please keep Joseph in prayers for healing and that the headaches resolve and that he is okay. He never had problems with headaches before this surgery.

Jennifer Richardson RN
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A Day of Miracles

Joseph has yet to gain a pound since his surgery 2 months ago. We battled to get authorization for a gastroenterology evaluation and received it. The gastro (GI for his stomach and abdomen) agreed with our cardiologist Dr. Chang (Chief of Cardiology at CHOC) that Joseph needed nutritional supplementation on a daily basis. Today we received a letter in the mail from CCS (California Children's Services) that approves Joseph for 2 cans of Pediasure every day for the next six months. The pharmacy said we could pick it up tomorrow! Praise Our Lord that Joseph loves the chocolate. We pray this will help Joseph in a turning point to gain back the weight he lost and desperately needs.

We also received the medical records for Joseph and Michael from their previous endocrinologist for their Growth Disorders, which is a blessing. Unfortunately, the information and doctor notes are limited and will not help get Joseph into endocrinology for his Growth Disorder, which is well below the 3rd percentile. I am glad to have them anyhow.

Jennifer Richardson RN
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A Beautiful Prayer - "St. Patrick's Breastplate"

"Christ be with me,
Christ within me,
Christ behind me,
Christ before me,
Christ beside me,
Christ to win me,
Christ to comfort and restore me.
Christ beneath me,
Christ above me,
Christ in quiet,
Christ in danger,
Christ in hearts of all that love me,
Christ in mouth of friend and stranger."

Christ be with you,
Jennifer Richardson RN
www.richardsonstudios.blogspot.com
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Words to Live By

"I pray that you will understand the words of Jesus, 'Love one another as I have loved you.' Ask yourself 'How has he loved me? Do I really love others in the same way?' Unless this love is among us, we can kill ourselves with work and it will only be work, not love. Work without love is slavery." -Mother Teresa

Happy New Year 2010!

Happy New Year 2010!

"For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11

From Mary, we learn...

"From Mary, we learn to surrender to God's Will in all things. From Mary, we learn to trust even when all hope seems gone. From Mary, we learn to love Christ her Son and the Son of God!"
--Pope John Paul II

2009 Another Year!

I have been overwhelmed in dealing with my children's chronic illnesses the last two months, so I am behind in posting. We had 11 hospitalizations during 2009 with most of them during the past 6 months. After being on the road so much with doctors and hospitals, I was blessed to stay home and just sit on the couch this Christmas so to speak. I actually read a book for the first time in a long time, Code Orange. The story is interesting if you like a medical mystery. I know. Of all the books I could choose, why that one? It happened to be given to me by someone at the hospital.

It has been quite a year of blessings, trials, and tests of patience and faith.

Gabriela stabilized from her Bipolar and has made progress in school along with quite a bit of growth in height as she grows into a lovely young lady.

Joshua learned how to read, shared his interest in history and "old" things along with his desire to learn about dinosaurs, rockets and to become a pilot one day.

Shawna wants to be a "blue" doctor, a gymnast or dancer, and has an incredible love for horses and reindeer (particularly Rudolph). Her favorite songs are Rudolph and Oh Christmas Tree. She grew 3 inches this fall and grew from a size 10 shoe to a size 12 shoe.

Joseph is learning to spell along with constant work on ABCs, 123s, colors and shapes; Joseph had his 4th open heart surgery during which he received 3 units of blood and 1 unit post surgery (4 total) and came out with a parlayzed diaphragm and a bovine tissue patch which the surgeon failed to tell us about. (That is another story all in itself for another day and another post). We transfered all our care back to CHOC. He lost 5 pounds during surgery and is not gaining weight; we are trying to get him an appointment with gastro. We were all glad when his pneumothorax (collapsed lung on the right) cleared up, when his pleural effusion (fluid around the lung on the right) cleared up, and when his pulmonary hypertension was back under control. He has to work harder to breath now that his diaphragm does not work. He also has to cough more often to keep fluid out of his lungs and keep his lungs open. He is just so skinny. I can wrap my thumb and pointer finger around his biceps quite easily.

Michael has endured many medical battles this year and continues on chemo and a slew of medication to keep him stabilized. His kidneys, thyroid, growth, seizures, lupus and anemia continue to be big concerns. He made it through chemo this month without vomitting a single time; praise the Lord. He started having seizures again (3 on 12/20 and 1 on 12/23) along with increased muscle tremors he cannot control; neurology had to increase his Topamax. He is retaining quite a bit of fluid as his kidneys do not seem to be doing well; his eyes are swollen most days the past 2 weeks along with his legs and knees despite the Lasix. His last hemoglobin on 12/21 was 7.8 (quite low, normal is 12); walking even short distances seems to wear him out. We still have not received a wheelchair as ordered by orthopedist, pediatrician, and rheumatologist. He collapsed at CHOC walking from St. Joseph's to CHOC, which is literally across the street. The hematologist is concerned he may need a blood transfusion and asked for STAT repeat labs today along with a type and cross for a unit of blood. We will hear more tomorrow.

In the meantime, please keep praying. I worry about Michael who is such a brave soul. He had been seeming to do better, and has been doing worse again the past 2 weeks. I worry about Joseph and his not gaining weight. I praise the Lord for all the small victories, miracles and angels who have touched our lives.

Christmas was a blessing. Our dear friends Laurie, John and family gave the kids gifts, clothes and my first ever live Christmas tree. Believe it or not, I had the least problem with my allergies this year than previously. The tree was a Douglas Fir and recently washed off by the rain, which I am sure helped. My sister Kathy, her husband Jeff, and kids Marisa and Ryan sents all the kids pajamas, socks, underwear, books, and toy. I was thrilled and overjoyed. My personal favorite part was the socks and underwear. Very cool. Gifts only a mom would appreciate. Although, Shawna was so excited over her new clothes that she literally had to try on every single thing undies included. She was completely delighted. We had the wonderful time of talking with all our different family members and grandparents on Christmas. Dr. Boon, our rhematologist, gave the kids each a Christmas gift. Dr. Pepper (yes the soda) gave each of the kids a gift. A certain wish foundation gave the kids each a gift and Joseph some incredibly awesome photos including a very grand scrapbook specially made for Joseph from his Wish day. Yes, it was blessed. We were glad Santa even made it to our house this year with help from special elves. The children were blessed with more than we could ever have given them. My favorite part was reading the Legend of the Christmas Tree, the Legend of the Christmas Stocking and the Legend of the Candy Cane. Our big TV broke down earlier this year, which has given us the opportunity to spend family time with other activities. Our little TV in the bedroom is difficult to get everyone around. Shawna's favorite part of the Christmas season was decorating the Christmas tree and getting a real tree. She is already talking about how we have to get one and decorate another one for the next Christmas. Scott enjoyed some time to sleep. The kids all enjoyed playing with new toys. I am trying to get in as many deep breaths and moments to de-stress as I can. I even got my hair cut from quite long to shoulder length this month. That was a nice change. My last hair 'salon' cut was quite literally more than a year ago.

Praying for a happy, healthy and faith-filled New Year in 2010!

Merry Christmas. For Christ Our Savior is the reason for the season. Jesus is our True Blessing.

Happy New Year! Please be safe.

Jennifer
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"All things were made through Him, and without Him, nothing came to be. Whatever has come to be, found life in Him" John 1: 1-18

October 18th - As if this was not enough - Chips Adventures Inside Our Couch

Okay, tonight our weekly adventures continue. I was sitting on the couch with my legs propped up to relax after a stressful week. Chip, in his infinite wisdom, decided to crawl inside the couch. Now, he has done this before. Usually, we quickly get him and scold him; end of story. Not tonight! Chip had crawled in the couch between the seat and the back of the couch where the couch folds up. I guess it was a nice warm hamock. Problem is, he couldn't get himself out. We couldn't fold the couch up either cause it would have squished him. We could not stand the couch on end because he might have gotten hurt by the steel frame; and, our couch is quite a heavy sucker too. After much deliberation, my genious husband suggested that if we could just get some of the seem undone that he might be able to get out the side. It took a bit of doing, but we were able to loosen a couple of staples. Chip happily crawled out unscathed. He had us all worried and concerned. After Kojo's adventure yesterday, we did not need another injured dog! Oh my goodness. What next?!?

Jennifer Richardson RN
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October 17 - Stress Continued - Kojo's Tail

Well, I would say this has been an extremely adventurous week with quite a few ups and downs much like a roller coaster. I think this week has a mind of its own. Our dog Kojo in an effort to chase his tail, scratch his tail or just chew off some pesky flee, actually bit off the end of his tail. We had to take him to the emergency animal hospital (after hours when everyone else is closed of course). The first visit they tried to glue his tail with special glue to help skin heal together. After barely getting home and a short period of tail wagging, his tail was gushing as much as before. We rushed him back in. This time to the after hours hospital, since the previous one was now closed. Kojo ended up having part of his tail amputated in order to fix him up. He is slowly mending, although he still really likes chasing his tail. The vet said it may be a neurological thing. Great! A neurotic dog. Not really; Kojo is a very sweet dog who likes to play. We will be so glad to see him all better.

Jennifer Richardson
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www.academyofthepossible.com

October 16 - A Very Special Day for Wishing

Michael had the pleasure of being chosen by a group where he could wish for the stars if that is what he wanted. A team of people came out to ask him about all of the things his heart desired. We were so thrilled for him with all that he has been through the last few months, not to mention years. His life has been tough from the start. It is so nice to see him with a reason to smile again. The worries on his heart are so large, and sometimes you can nearly see them sitting on his shoulders. Michael has such a huge heart; his dreams were about being sure his family was taken care of. To top the day, we just received a letter stating that Joseph was chosen by them as well. All of our children were wishing on stars tonight and dreaming with big imaginations, Joseph and Michael in particular. I know they both want ABC to come so badly; I hope they can look at the blessing this has to offer and trust that the Lord will provide for their needs in his good time. They even got to meet the dog who is the mascot. Quite exciting.

October 14 and 15

The 14th and 15th this week we have been very worried about Michael. After his huge seizure on Tuesday night, he is having a great deal of trouble with walking, balance and coordination. He has already tripped and fallen several times. He is also having trouble with drooling, swallowing and choking and gagging on food. The neurologist says this is an exacerbation of an already existing deficit, meaning his cerebral palsy, and that the post seizure effects usually resolve within 24 to 48 hours of the seizure. That would have been tonight, and that does not seem to be the case. We are still seeing smaller seizures too. Hopefully the seizure medication Michael is now on will help soon; it is not at a therapeutic level yet.

Jennifer Richardson RN
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www.academyofthepossible.com

October 13 Seizures

Michael had a Grand Mal seizure, also known as a tonic-clonic seizure. It was rather frightening. Even with all of my own education about it, the experience is entirely different when it is your own child. He stopped breathing for 3-4 minutes turning completely blue. A full blown seizure in every way. Michael took quite a while to come back around to the point of awareness of everything. We are still seeing some deficits as a result of this seizure including weakness, tripping, and falling etc. Michael slept quite a lot the next day, even at the neurologists office. Michael has had other seizures which have been smaller and are classified as simple partial seizures or complex partial seizures since September.

Please keep Michael in your prayers.

DPGN or Diffuse Proliferative Glomerulonephritis

There are only 5 different types of kidney disease in Lupus. Type IV is Diffuse Proliferative Glomerulonephritis, which is the most serious type of kidney disease in Lupus. DPGN is the most severe and is very aggressive. According to the National Kidney Foundation (2009), DPGN the "kidney filters [are] damaged and thickened, the cells...are overgrown, and their may be areas of dead tissue ('necrosis') or breakage...causing inflammation around each kidney filter, called 'crescents'. This type of kidney disease requires vigorous treatment...with powerful [medications]...there is a significant risk of developing severe kidney failure, and needing long term dialysis (artificial kidney treatment)."

This is the type of kidney disease Michael has.

Thank you for your prayers.

Jennifer Richardson
http://www.richardsonstudios.com/
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How To Pray The Rosary

The rosary is a simple prayer consisting primarily of the Our Father, Hail Mary, and the Mysteries.

If you would like to learn how to say the rosary, you can go to this website:
http://www.rosary-center.org/howto.htm

The Jesus Prayer

The Jesus Prayer is simple. Say this simple prayer.

Lord Jesus Christ, Son of God, have mercy on me, a sinner.

If you would like to learn more about the Jesus Prayer, a prayer made popular and said by Eastern Orthodocs and Catholics alike go to this website:

http://www.jesusprayer.org/

Devastating News

The results of Michael's renal biopsy came back. The results are not at all what we hoped, but it does explain many of Michael's symptoms and the reason his blood pressure has been so labile. Michael's kidneys are very sick with over fifty percent involved. Michael has an extremely aggressive form of kidney disease called Diffuse Proliferative Glomerulonephritis which requires chemotherapy through an IV. Michael will be admitted to the hospital once a month to receive this therapy. His seizures are also worsening, and we don't know why. Seizures are not a typical response to Lupus.

Please pray with us on Monday, October 12th and Tuesday, October 13th for Michael to go into remission and the incredible power of the Lord's healing to flow through his body. We will be storming heaven with our prayers, for direction, for Michael's healing, for the doctors hands and wisdom. I will be saying the rosary and many Our Father's if anyone would like to join me.

Jennifer Richardson
www.richardsonstudios.com
www.academyofthepossible.com

Proposed National Health Care - Against / Getting Your Attention

On the extreme side, the government having our health history could be worse than devastating. Some people might say this is an exaggeration, but I don't think so. Look at what Hitler did when he decided he did not like anyone who was less than a perfect Aryan German. He gained power, and no one stood up against him until millions of souls were killed. Is this proposed National Health Care Plan in everyone's best interest? Perhaps, not. Passing this health care bill may open some doors that we don't like. Later, it would be too late; I would hate to look back and wish the health care bill had never been passed. While the US government may not open concentration camps today, they have in the past. Having our health history certainly makes it much easier for the government to decide that people with a specific history should be euthanized or denied health. Look at what happened to the lady whose food was taken away. I do not agree with that. I believe it is handing way too much power to the government. I value my freedom and the freedom of my children way to much to agree to pass a bill such as this. What if the government decides people with a history of heart disease or high cholesterol cost too much and cut benefits for only those people; that is just another form of discrimination. To me, it sounds like boiling a frog; if you start at a cold temperature and turn it hotter really slowly, the frog will cook to death and not even know it. I believe this health care in the hands of the government is dangerous, and I encourage everyone to speak up and contact their government officials. I just don't think we can afford to be quiet on this one, and I don't think this is an exaggeration either. What happens if the government decides that medications will no longer be covered for a specific group. This has the ability for discrimination at its worst! Should we have to pay a hefty financial penalty if we don't like the insurance plans that are offered? Who would we sue? The government? Who is liable then? When the government controls health care and chooses to deny care to everyone with diabetes because they have to cut spending, or decides no medications will be covered because they have to balance the budget, or decides everyone with a history of cancer will not be covered because they cost to much, who are you going to sue? The government?

I don't want my son's health care controlled by my government. Health care control belongs in the hands of doctors and their patients, not in the hands of government or insurance companies. I want the best for my kids and my son. I don't believe the government or an insurance company for that matter can make a better decision than a parent, a patient, or their doctor. Period. I don't believe any health care proposal the supports abortion is the answer.

Don't you want health care? Of course. But, we are already paying for it twice. Once through the premiums, and a second time through our taxes. We don't need to pay for health care a third time through penalties and higher taxes as proposed. The proposed plan will cost money to implement. Where is that money going to come from? Us, our taxes, and our children's taxes.

Is there a better way? In Virgina, CNN reported a medical group who eliminated processing claims due to the high overhead and instead charges patients lower fees. It makes sense. How much can a practice be making anyway with the tons of paperwork required to process a medical claim? Not as much as you think.

If you have read this post, good. I am glad I have your attention! That is the whole purpose of this post. I urge you to read the proposed National Health Care Plan for yourself. Do not just rely on what you have heard from others. Health care is a very important issue. You should be involved because it affects you. You might be surprised at what is really in there.

Heartbreaking Moments

It is heartbreaking how ill so many of my children are. I have my moments when I break down and cry, and I have my moments when I learn really how strong I am. Most everything else seems so small in comparison.

Jennifer Richardson RN