Our Weekend

Shawna had her "wish" day. She got to ride a pony! We took her to Irvine Regional Park on Saturday (13th) courtesy of some generous loving friends of ours. She rode on a smaller pony, a girl, named Corkey; these were the walking ponies. Then, Shawna rode on a taller trotting pony. We have pictures. She loved every minute of it. All of the kids rode the mini train to see Irvine Regional Park, and then got to go see the animals at the Orange County Zoo. If you have never been all the "rides" are fairly inexpensive. Admission to the zoo was only $2.00 each. Shawna enjoyed a special snowcone and was blessed with her very own train whistle. The highlight of the zoo was seeing the new mountain lion, which has only been in training for 3 months. We were able to see them training her and feeding her meatballs for rewards. A nice day all in all. Shawna loved every minute of it, and riding the ponies was clearly her favorite.

On Sunday (14th), all the kids were blessed to participate in a special event by invitation only to at Pacific Park on the Santa Monica Pier. We enjoyed a free lunch with hamburgers, hotdogs, and chicken and drinks. Michael, Gabriela, Joseph and Joshua were able to do some really high trampoline jumping attached to a harness and bungy cords. Scott, Michael, Shawna, Joseph and Josh enjoyed a Submarine ride which basically takes you up in the air in circular motions; it was a mild ride but fun. Joseph, Josh, Gabi and Shawna tried darts and most of them were able to pop some of the balloons. They were all blessed with a very soft stuffed Winnie the Pooh and Minnie Mouse.

Sunday (14th) and Monday (15th) we were blessed by more friends with nice packing boxes, which we are working on filling.

Tuesday (16th), we were grateful to hear Medi-Cal has switched Michael and Joseph over to the program they need to be in to receive better medical care effective tomorrow. We expected this to take weeks longer; thanks to a very nice worker in one of the offices, it did not. Michael will be able to see the allergist / immunologist for his Eosinophilic Esophagitis and possible food allergies and the epileptologist for his seizures. Joseph will be able to see neurology for his headaches. Gabriela has been flying through the 4th grade material quite literally.

We are re-doing are online store (www.shop.richardsonstudios.com). It is down for now. It will have a new look and new merchandise. We will keep you posted, so please check back for updates.

God Bless Your Journey,
Jennifer Richardson
www.richardsonstudios.com
www.academyofthepossible.com
www.richardsonstudios.blogspot.com

Serenity Prayer

Lord,

"Grant me the serenity to accept the things I cannot change;

Courage to change the things I can;

And wisdom to know the difference."

Reinhold Niebuhr, theologian

Medi-Cal / Medi-Caid

We live in California. We received a letter in the mail stating that we would at some point have to pay back for all the medical expenses incurred and that the state / government could come after us, our estate, any bank accounts, our children and their income and estates, grandchildren etc etc until the money is paid back. We have five kids all on MediCal at the moment, one has had 4 open heart surgeries and in the hospital 3 times this year, and one in the hospital 12 times so far in the last 12 months and on 40 plus pills a day. If I added up all the medical expenses, it probably exceeds 2 million dollars. If I had the money, I never would have signed up for the care in the first place. Duh!! It is a complete disinsentive to ever bother making any money. I guess free medical care is the most expensive medical plan ever. So much for our brilliant government. It would make more sense for them to give people insentives to try and find work and do well rather than insentives to not bother. At the moment, unfortunately, we don't have a choice because the kids need it. Heaven help us. I believe it shows how desperate people really are. In times like this, we need our faith more than ever.

PTL
Jennifer Richardson RN
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Miracles Truly Never Cease!

Last weekend was really challenging. We are planning and preparing to moving. During all of this, the van appeared broken and was making this awful noise. I thought it was the starter or alternator or a short in the engine because all of the lights come on fine. We could not get the car to start. We let the car sit until Monday morning thinking we would have to have it towed and cancel all of our appointments for the week. I was feeling particularly desperate. We had heard nothing on Joseph's SSI application even after this being our 5th month of waiting and several inquiries. All we were ever told was that it was still in medical determination. Well, Monday morning we decided to try and jumpstart the car again. After much prayer and a plea to the father for some divine help, we hooked up the jumper cables to our other car. Scott was hoping that the heavy rain got the engine wet causing the problems. We were both praising the Lord when the car really did start after drying out over the weekend. That was miracle #1. That was a true answer to prayer because Michael had been invited to a special event and presentation by Blizzard Entertainment (who makes video games) who raised over a million dollars for his Wish foundation, which was the very next day. It was spectacular that he got to go and see how the process of making video games works and enjoy the day. The fact that Michael got to go at all (because the Lord gave us a way to get him there) is miracle #2. He was even blessed with a wonderful drawing of himself by one of the animators who made Michael a character drawn as a wizard. Among other things, he received a hat and t-shirt. Michael needed this pick me up so badly after having such a tremendous month being in the hospital and close to 30 seizures. He was really struggling with fatigue, muscle weakness, feeling like a show when he has a seizure, the doctors questioning his believability (some accused him of faking them), his ability to be independent in various tasks, his memory and balance (which are affected by his seizures), the frustration in not being able to control his own body and the fear that goes along with all of that. As far as the accusations of Michael faking seizures, we have captured them on video and know 100 percent that that is not the case. After entering tons of data into a wonderful program called www.seizuretracker.com , we knew the Topamax was giving Michael very very serious side effects. The neurology group at CHOC would not listen. I started weaning Michael off the Topamax anyway. Now that his dosing is half of what it was, we can see that the side effects are half of what they were and some of them on their way to disappearing. We also know that Topamax on rare occasions can cause seizures, and had strong evidence showing this in Michael. The trending data we were able to obtain showed a very clear increase in seizures and side effects with increases in the Topamax. Some doctors just think they know everything. Michael has not had a single seizure this week on the lower dose of Topamax, which is another small miracle. That is miracle #3. Sometimes I think nurses should make the higher income for all the babysitting they sometimes have to do with some doctors who are clearly incompetent. All they had to do was listen, and they would have helped their patient. Just stupid. Having the car fixed also allowed us to visit my parents and Aunt Diana on Wednesday to celebrate Shawna's birthday turning 4 years old. That was miracle#4. Shawna has been counting the days down to her birthday since well before Christmas and looking forward to being 4 as a big girl and sitting in a big girl booster seat in the car finally. Yeah!!!

Thursday was another day of miracles. I prayed to St. Jude and St. Rita that morning in pleas of desperation asking them to intercede on our behalf for the house, for the SSI, for Michael's wheelchair, and for God's divine intervention. Michael had physical therapy that day and was thrilled when he got to test out a wheelchair. Michael had wheelchair training in the type of electric chair that will suit him well. That was miracle #5 because we have been trying to get Michael a chair for a while. It is just not okay for a 13 year old to have to sit in a stroller because we can't find an affordable wheelchair and because he is to tired and weak to continue walking. Chronic anemia, Lupus, Rheumatoid Arthritis (among the many other diagnosis that Michael has) takes their toll after a while. At least the process to get Michael a wheelchair is underway. An electric wheelchair is miracle #6, and it sounds like we may get ramps to help load it into the car and a manual wheelchair as well for back up, which is miracle #7. Right after we got to the car (when physical therapy was done), I received a phone call from social security who told us to expect a check for Joseph for presumptive expenses. They had not received a final determination, but we so sure he would be approved that they were sending us money anyway that we would not have to pay back. That is miracle #8.

Eight miracles in one week. Thank you St. Rita, the saint of the impossible. Thank you St. Jude, the saint of hopeless causes. Thank St. Rita and St. Jude for interceding on our behalf. I honor you this week and am grateful.

PTL
Jennifer Richardson RN
www.academyofthepossible.com
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Gabriela got promoted from 3rd to 4th grade

Gabriela finished 3rd grade yesterday 02/11/2010 and passed her 3rd grade assessment test as well. Isn't that fantastic? It has been a struggle for her, so she is very proud of herself. Gabriela is now a big 4th grader and making progress quite well already.

Jennifer Richardson
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Joseph is gaining ground

Joseph (8 y.o.) is gaining ground at learning his numbers after losing quite a bit of ground during and after his heart surgery. He can recognize, say and write the numbers 1, 2, 3, and 4!!! Small steps are big gains for him.


Jennifer Richardson
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Joshua is doing well in math!

Joshua (6 y.o.) seems to be doing quite well in math. Although his writing needs a great deal of work, his math skills seem to be quite good. Recently, he learned how to count by 2's and 10's. He is already 3/4 of his way through first grade math. I am so proud of him.

Jennifer Richardson


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Writing Santa for a New "Blue" House

Shawna (3 y.o.) and I were talking. She noticed that there were things in the house that needed fixing. She said, "I know. Let's ask Santa Claus for a new house. Blue. Blue house, blue roof, blue walls, blue ceiling, blue floor, blue cabinet, blue trashcan, blue toilet. Allllllll blue. And presents too."

Do you think her favorite color is blue? Oh yeah! I thought that was very cute. I wish it were that simple. The bank foreclosing on our house does not see it that way. Who could plan for 14 hospitalizations within a 12 month period, several kids being in the hospital, sometimes in the same month, and our sweet son Michael getting so sick? God has a plan I'm sure.

Please pray for us.




Jennifer Richardson



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Seizures

Michael was in the hospital for the umpteenth time (I think this is the 14th time) the first week of this month for seizures this time. He was having multiple seizures, lasting up to 15 minutes, several with loss of awareness, and last I counted I think he was having 7 different types. While the doctors did several tests, we don't have any new answers. We were very unhappy with the care from the neurology group at CHOC and would not recommend them to anyone. We were extremely disappointed that Michael's regular neurologist did not even come to see him. We found the neurologists on staff unprofessional to say the least after accusing Michael of making them up of all things! Even Michael's rheumatologist did not agree with that. Michael had 22 seizures within a 7 day (1 week) period. The types and number of seizures he has and has had are far too complex for any child to make up. We will be changing neurologists, to say the least. Fortunately, we have caught some on video clips; hopefully that will help the new neurologist.

Jennifer Richardson
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"Each of us is the result of a thought of God"

"And only where God is seen does life truly begin. Only when we meet the living God in Christ do we know what life is. We are not some casual and meaningless product of evolution. Each of us is the result of a thought of God. Each of us is willed, each of us is loved, each of us is necessary. There is nothing more beautiful than to be surprised by the Gospel, by the encounter with Christ. There is nothing more beautiful than to know Him and to speak to others of our friendship with Him." Benedict XVI

With man this is impossible, but with God all things are possible.

As Scott and I work on laundry and clean the house, I love hearing the giggles of my children when they are playing. It is the most wonderful sound. Joseph and Joshua and Shawna, right now, are playing together with the many small cars and firetrucks we have. The sounds in the house are the imaginary sirens the kids make as they push them along.

Praying for the situation for our house, which right now is not looking to good, but having faith in Christ for miracles big and small.

"With man this is impossible, but with God all things are possible." Matthew 19:26

Jennifer Richardson RN
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...Christ has bound our enemies...

"And of what should we be afraid? Our captain on this battlefield is Christ Jesus. We have discovered what we have to do. Christ has bound our enemies for us and weakened them that they cannot overcome us unless we so choose to let them. So we must fight courageously and mark ourselves with the sign of the most Holy Cross." - St. Catherine of Sienna

SSI Dropped the Ball

SSI dropped the ball. We found out they have had Joseph's SSI application sitting on someone's desk for 4 months now. We went in today and were finally delighted to hear his file is awaiting determination and everything is complete. Hopefully, they will make their decision in our favor soon.

We also found out that Gabriela's previous family never received a US Certificate of Citizenship even though she came over on an IR3 Visa and applied for her Social Security card under resident status only, so we have to go to the Department of Homeland Security in San Bernadino to fix it, get a US Certificate of Citizenship, and then fix her SS card. Social Security will not fix her name on her SS card unless we do this despite our battling with them. We had been told that once a child has an IR3 Visa they are automatically a US Citizen, but no one ever told us that they expire after a year. We understood the IR3 Visa to be the Gold Standard among adoptions, but the Gold Standard as far as US Citizenship goes for a child adopted abroad is not even a US birth certificate but a US Certificate of Citizenship. The US Certificate of Citizenship is supposed to be automatically mailed, but we never received one for Michael either. We also were told we would have to apply to update the names on Joseph and Joshua's US Certificates of Citizenship, which they did receive fortunately but now since our adopting them their last name in particular is wrong. So basically, we are in the same boat for Gabriela and Michael and also have to deal with Joseph and Joshua's. That's four of them, and they are very expensive.

Please keep our struggle through more red tape for the welfare of our children and God's financial provision for it in your daily prayers.

Jennifer Richardson RN
www.richardsonstudios.com
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Shawna cut her own hair!

Oh my goodness. Shawna played hair salon to my shagrin with her sister's real scissors on her own hair. Thank God that she cut it in the front. I was able to easily fix it, and Shawna was delighted to get bangs. She likes getting her haircut ever since we took her to the salon for a big girl trim. I think she liked the experience quite a bit. After I trimmed her bangs, she brushed the rest of her hair off her face and said "Ahhh, that is much better now" with a great big smile. She really does look quite cute. I am amazed at how different she looks from all of her hair being long (100% of it) to her new look with long hair and bangs. Her hair is still beautiful chocolate brown down to her low back. I just love her hair; it's so beautiful. Well, it is quite a cute look on her if I do say so myself and really highlights her gorgeous eyes. I will have to take a picture.

Jennifer Richardson
www.richardsonstudios.com
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Love Forever!

This is a poem my daughter wrote for me tonight after we had a wonderful mother-daughter talk about letting go of painful memories and how much progress and growth she has made. I told her I was so proud of her. She surprised me with this tender gift of words.

"Title: Love Forever!

Dear Mom,
Thank you.
Sometimes you can be mad!
Kids can hold the memories
Of the past for awhile,
But it's mom's love forever!"

Written by GabrielaEileen KellyLuba Richardson, age 11
Copyright 01/28/2010. All rights reserved.

The Far Reaching Affects of FAS

Someone asked me what my personal opinion about FAS was. I definitely agree that this is not considered a true disability most of the time by medical and psychiatric professionals pretty much across the board. I, personally, believe it is very much a true disability and that the effects of Fetal Alcohol Spectrum Disorder / Fetal Alcohol Syndrome / Fetal Alcohol Effects (FASD, FAS, FAE) are far reaching affecting many areas of a persons life inclduing decision making skills, intellect, social skills, impulsivity, and many other areas. I think until one encounters the true ramifications of it that there is a lack of understanding. Awareness and education among the medical community is so needed. My 8 year old son is severely FAS and functions at a 2-3 year old level socially, academically etc. He is also impulsive, low IQ, does not know all his letters, shapes, colors, numbers. We work with him one on one with all of these basic things. He struggles with snaps and buttons. The FAS has effects on the person that are far reaching. I think what a lot of people do not understand is just how difficult it can be and that similar to autism that it really is a spectrum disorder with ranges from mild to severe. Even with multiple other problems, we have struggled to get our son the services he needs. The fact that we adopted him does not make much of a difference either to professionals; they just say we are so nice. His speech is rather poor, and he really needs ST badly. I wish we could afford the Rosetta Stone English to help him learn better English skills. My best advice is don't take no for an answer. Keep advocating. Keep looking. Keep asking questions. Most importantly, keep fighting for what your child needs.

Jennifer Richardson RN
www.richardsonstudios.com
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Speech, Endocrine, Neuro and Pediasure

Auditory Processing Disorder is a disorder where the brain does not process information that is taken in and received correctly and does not process information that it is trying to put out correctly. Michael finally had the speech evaluation for speech therapy that we have been trying to get forever. The speech therapist found that Michael's APD is more severe than we had thought and was glad it was diagnosed; she will definitely be recommending speech therapy for him. The APD affects many facets of his communication which includes verbal but is not limited to just verbal communication; it also affects many areas of his academics including phonemics, writing, spelling, vocabulary, listening, short term memory, instructions, information retrieval and others. I was unaware of the fact that speech therapy could help Michael in this. The public school had diagnosed Michael years ago, and apparently should have referred him to speech therapy and didn't. It is very upsetting to find out that he could have been receiving help for this for the past 6 years. I can't even tell you how urked I am to find this out. What a disservice they have done for my son who clearly was having trouble and could have been helped if they had listened to me the parent when I told them all this so long ago. APD has been described to me by Michael as like trying to communicate information to someone through the distortion you might hear on the radio when you are trying to hear a song but there is feedback and the signal is distorted and you just don't get all of what is trying to come through that signal. Parts of the song get stuck in radioland and are just missed, so the meaning is missed, and trying to talk to someone or understand someone through all of that loses important meanings. The only reassurance is that at least we know and understand better now. We will include that with all the other therapies he needs (PT, OT, ST).

We is having numbness and tingling in his hands and fingers with hypersensitivity and pain in his fingers, which could be from his seizure medication or from losing potassium. Neurology wants us to increase the potassium in his diet to see if that helps. He certainly is on enough different medications that could cause him to lose potassium (Miralax, Prednisone, Topamax, and Lasix among others). I hope it helps. We will add that to his already specialized diet. He is on low sodium and no added salt for his kidneys, low glucose for his elevated blood sugar due to the prednisone, and now added potassium as well. Neurology will follow him at least.

Michael saw endocrinology. We have a praise report here. Michael's thyroid levels have been stabilized for a few weeks without having to increase or change the dose on his Levothyroxine. Praise the Lord. Endocrinology also wanted Michael on growth hormone since October. It has been an argument with CCS ever since, and we know they received all of the information and got the right labs and had the information. Nordicare thankfully provided Michael with 2 months of free medication for the growth hormone. Michael was fortunate enough to have growth hormone for 2 months in 2008 (about a year ago) as well, so now we have it well established that he responds well to it because he grew both times he was on it. The case manager and endocrinologist said they would go to bat for us to try and get an authorization from CCS and send a very detailed letter of medical necessity. All of his growth factors and levels are really low and his bones are now 5 years behind (getting worse as he gets older).

The same endocrinologist said he would see what they could do about getting Joseph into endocrinology for his own growth disorder. Isn't that wonderful? Also, Joseph now has Pediasure praise God. He seems to like the chocolate and vanilla really well. We hope it will help with the weight gain he needs so well.

Well, we have been waiting for the SSI application for Joseph for months. We found out that the SS office dropped the ball. They had done nothing with it, lost some of our papers and had it sitting all this time on someone's desk. Uggh!

God bless you,
Jennifer Richardson RN
www.richardsonstudios.com
www.academyofthepossible.com
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My Prayer

Dear Lord,

I lift up Gabriela to you and her struggle with her attention and focus, especially in her school work. I lift up Joseph and his special learning needs and the frequent reinforcement he needs to master skills. I lift up Michael to you and all his many struggles, particularly his desire to keep up with his school work especially in the hospital and at the many appointments he has to keep him functioning at the level he is at. I lift up Joshua and Shawna's simple desires to learn. Lord, I ask that you would please make a way for a miracle in all of our children's school needs, laptops and the new individualized computer curriculum that each of the kids need (such as SOS for Michael and Gabi). I believe in you Lord and have faith. Thank you in advance for meeting all of my children's needs and our house too. Thank you Lord for providing for our shelter and every need.

Amen.

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
www.richardsonstudios.com
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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