Christmas Day 12-25-2010

This year all the kids made their own Christmas gifts. Michael, 14, knitted hats and scarves. Gabriela made bookmarks and necklaces. Joseph colored rulers. Joshua gave everyone a piece of candy (not homemade but very inexpensive), and Shawna colored picture frames with pictures of each person in them. It was quite a lot of work helping each child, but I enjoyed so much seeing their creations. I absolutely loved opening them.

Michael made me this gorgeous scarf with dark and bright red. I can tell just by looking at it that he took great care in making it. Each of them put a lot of thought into their gifts.

The children were also immensely blessed by the gifts they received from Santa himself, friends and family alike who put many gifts under the tree. What a great blessing. The kids thought all their gifts were fabulous.

For Christmas dinner, we had cranberry sauce, applesauce, mashed potatoes, biscuits, Black Forest ham, carrots, and either cranberry cooler (half and half cranberry juice and sprite), apple soda (half and half apple juice and sprite) or coke.

Thank you to everyone who helped us come up with ideas for doing this this year. It really helped stretch the finances as well.

In celebration of Jesus' birth this season, may God give you joy!

God bless you,
Jennifer
Mom to 5 special kids, Michael 14, Gabriela 12, Joseph 9, Joshua 7 and Shawna 4

Halloween

I just love this picture of all my sweeties. Michael is 14. Gabriela is 12. Joseph is 9. Joshua is 7, and Shawna is 4. Halloween was fun. This year each of the kids dressed up in the anticipation and excitement of getting candy for trick or treating. Shawna was a blue fairy. Gabriela was a Roman princess. Joshua was Bumblebee from the movie Transformer's. Joseph was a fireman. Michael was Batman. All of the kids picked their own costumes. We could not recycle any of last years because all the kids had grown so much, so new costumes were fun. We had an interesting challenge finding candy Michael could eat with the Eosinophilic Esophagitis he has and the long list of food allergies. Jolly Ranchers and Skittles were two candies we found that he could enjoy. Our beloved friends the Bruhns were kind enough to make sure they had some of these for Michael to receive when we trick or treated at their house.

God bless you,

Jennifer Richardson

Prayer

Praise you Lord!
You are righteous.
Praise you Lord!
You are holy.
Praise you Lord!
You are miraculous.
Praise you Lord!
You are eternally divine.
Praise you Lord!
You are patient.
Praise you Lord!
For all that you are!
Praise you Lord!
Open my heart to love you!
Open my ears to hear you!
Open my eyes to see you!
Open my hands to touch you!
Open my mind to follow you!
Bless me Lord!
In all that I do, all that I touch, all that I am.
In all that I put my hands and heart to.
Transform me Lord!
Expand my territory Lord.
I cry out to thee oh Lord as Jabez did.
I ask of thee.

Amen.

Jennifer Richardson

Control Amidst Chaos

While I have five children of my own, even I sometimes need to be reminded of how to get the kids under control amidst chaos. It can be very challenging.

If you are having trouble with too much volume and chaos in your home, I would start with 2 rules. Once you have conquered obedience with those two rules you can add one or two rules at a time from there.

The first rule would be "No yelling - use quiet voices inside". The second rule would be "No running inside the house - walk". I would tell the kids that loud voices and running are for the playground. When you explain the rules to the kids, have each one of them repeat the rule back to you. Ask each one of them if they understand what the rules mean. If each of them says yes, then they are responsbile for the rule. Then, they cannot come back to you and say they did not know what the rule was.

Then, every single time a child gets loud or runs put them in time out for the same number of minutes as their individual age. Keep a timer handy. The first few days you may very well be doing nothing else except putting children in time out over and over and over. They will test you to see if you mean it, but be consistent. If they get up from time out then simply get them and put them back in time out until the time is served. Choose at least a couple of different corners or seats or rugs or spots on the floor for time out. Then, always use the same spots. If your children are in time out over and over 2,5, 10 times or on and on. That is okay. Eventually, they will get tired of being in time out. They will get tired of missing out on play time, meals, or whatever else may be going on.

If you are out in public, reiterate the rules before you have the kids go into a store with you. Stand your ground. Even in a grocery store, you can have the kids stand in time out staring at the tomato sauce or cheerios. Or they can lose the privilege of walking and be put into the cart etc. You will succeed. You are a good mom, and you will feel better for sticking to the rules you set out. Even my own daughter, who at first I was convinced time out would never work on, gets tired of going back in the same time out over and over. This method works on children old and young, special needs or on target. The consistency really is the key.

God bless your journey,
Jennifer Richardson
Academy of the Possible
Mom to 5 kids, 14 boy, 12 girl, 9 boy, 7 boy, 4 girl

Cute Questions and Witty Thinking From my 4 year old

We were driving in the ce statedar the other evening when Michael noticed the moon up in the sky. He stated "Wow. There is only half a moon in the sky tonight."

Shawna asked in reply in her four year old brilliance, "Why? What happened to the other half? Did it fall off?"

Oh my goodness. It was soooo funny.

Jennifer Richardson

Update on Joseph's heart

Joseph's aorta is the one that is dilated. This means that it is larger than normal, which means the artery walls itself are weaker under the higher pressure. His aortic valve is also leaking. When it closes, it does not close tightly. This is referred to as regurgitation. Joseph's is moderate and has slowly gotten worse. These two combined make us concerned. It is my opinion that these along with the pulmonary hypertension are the cause of his ongoing symptoms this year.

We continue to pray that the Lord heals Joseph, that the aorta stabilizes. We continue to pray that the aorta does not rupture because this would more than likely kill him. Unfortunately, the risks of surgery in Joseph's current condtion are too great.

Thank you for your prayers.

Jennifer Richardson RN

Unpacking and More Medical Challenges

The new place is coming along. In the month we have been here, we have done quite a lot as for unpacking. There is still a lot to do though. I am very proud of the kids. They have been very willing to help. Considering we lost well more than a dozen pieces of furniture, which we used heavily for storage, I believe we have done an absolutely fabulous job of simplifying our belongings. When we started, the carport was completely filled with belongings and boxes and crates. We now have only a few left along the one wall of the carport including one shelf which was damaged during the move. We hope to fix the shelf since we cannot afford to replace it right now. We have had the joy of giving some toys to our new neighbors, and a large supply of books to CHOC's reading program. We have found a recycling center that took the cardboard, and were able to bless some friends who themselves needed boxes for moving. We have meet another family here whose son may also have bipolar or adhd disorder, and our kids have made friends. We have found it necessary to put limits on how often the kids play because they neighbor kids come over so frequently. We often have children from multiple families playing at our house.

School has started again, as I mentioned before, and is going well. Joshua is catching on to spelling and math well, although he writes some of his letters and numbers backwards still. Joseph is progressing, and his favorite subject is recess. Michael and Gabriela are excited to be starting again . Shawna is learning to write.

Medically, Michael is still having seizures. His eosinophilic esophagitis seems to be responding well to eliminating his food allergies and an elemental formula. His lupus is under control on multiple immunosuppressive medications.

Joseph had surgery for a heart cath this month, August 2010, and recovered well. We found that one of his heart valves is functioning poorly and leaking. We also found that one of his major arteries is dilated with the walls being thin and weak. Surgery is not yet imminent, and we will watch this closely. If it continues to dilate, get larger and develop into a full blown aneurysm, he will need another open heart surgery. Surgery is always such a big deal. Surgery, especially on the heart, is something that should be done only when the risks of the illness are greater than the risks of surgery. While a dilated artery is a very serious thing, the cardiologists believe waiting is the safer course. We can only pray that it does not suddenly rupture or balloon out, which would put Joseph's life in danger. Praise the Lord that the chief of cardiology is his personal cardiologist; he has the best care there is. Unfortunately, the dizziness and headaches seem to be primarily symptoms of his heart and pulmonary hypertension.

Michael and Joseph have both been having symptoms of blood sugar issues, and so are getting blood glucose checks at home. Michael's apparently are evidence of impaired glucose tolerance, which can be a precursor to diabetes due to the prednisone the physicians believe. His lupus is well enough that he is slowing weaning off the prednisone. We pray that resolves the blood sugar issues for him. Michael definitely does not need to have diabetes on top of all of his medical challenges.

Please keep us in prayer.

God bless your journey,
Jennifer Richardson

Mom to
Michael 14, Gabriela 12, Joseph 9, Joshua 7, and Shawna 4

Changes

We have had many changes in the past few weeks. We have simplified our things, held garage sales, given things to charity, slimmed down some, gone through stuff and pruned.

We have found a new house and moved. We sold our home, and the Lord has blessed us with the resources we needed to move. We have no garage as it is a mobile home, but it is slightly bigger. Thank you Lord for taking care of our family. We still live in Riverside. Having that major move behind us has even helped me.

It was a move which involved great blessings, great miracles, divine intervention from our sovereign Lord, and great pain and betrayal. We lost things we treasured and gained peace we desparately sought.

The medical challenges the children each have are still quite time consuming. We hope to make to a few more park days this year and be a bit more involved. We have started school again for the new year, and the kids are excited. Michael is starting a foreign language. Gabriela is reading Charlotte Bronte. Joseph has some new tools to help with his FAS and microcephaly and learning the funadamentals. Josh loves math, and I am excited to see how much he has progressed already. Counting by 2's and 3's and 5's were a struggle last year, and already he can do these skills now so easily. Shawna is much more interested in learning, and all the kids are excited.

I was thinking about ways I can be more organized, with grading, report cards etc. I was wondering how others did it and what works for you.

Thank you St. Rita, St. Jude and Jesus, Mary and Joseph for your intercession and divine intervention.

Praise you Lord,
Jennifer
Mom to 5 great kids
Michael 14
Gabriela 12
Joseph 9
Joshua 7
Shawna 4

"This is the trouble with secular humanism and materialism: There's noperson to love. So then the new way of the Little Flower is. fall in love.Love the Good Lord, and then you will strive to please Him. And because yousee that there are imperfections in you, you will love Him more so that theymay be washed away." -Archbishop Fulton J Sheen

"Never be in a hurry; do everything quietly and in a calm spirit. Do not lose your inner peace for anything whatsoever, even if your whole world seems upset."
- St. Francis De Sales

Happy 4th of July - Independence Day

What a fabulous day!!

It was a day that started at the crack of dawn and was filled with so much fun. The best 4th of July by far in a while.

We were honored to be invited to a Wish event which including getting up at 5am to be a Newport Harbor by 730 am with wheelchair, medication, oxygen, and medical supplies in tow with 5 kids. We were part of the Newport Harbor 4th of July Boat Parade which including a ride on a very nice large boat for many wish families. We also enjoyed breakfast off the boat and lunch back on the boat later. Being an all day affair, the Captain and Crew even accommodated the extensive food allergies of two of my kids with a stunning fruit plate. Breakfast was pancakes, eggs and ham. Later, lunch was hotdogs, chicken, macaroni and cheese and french fries. And of course, all you can drink drinks with cola, orange juice, sparkling apple cider and water. Ice cream sundaes topped it off. We enjoyed the photographers, music, magician, temporary tattoes and amazing weather with ocean breezes as we cruised down the bay. None of the kids got seasick. Praise the Lord. In fact, they (and Scott and I) had so much fun that we were all disappointed to see it end at 2:30 pm. The kids even got to visit with our friends the Buchbinders with Sherry, her husband and Doc-Barker.

Getting home about 4:00 pm after such a long day, the kids were full of energy to try and sell a few things in a later holiday yard sale. It was great to give me the chance to go through some things in the garage and do some laundry. We closed the even barbequing chicken, steak and hotdogs. We even found some gluten free soda for Michael and Gabriela.

What a long day!

Michael only had one seizure that lasted less than a minute at that end of the day. Not too bad. We were very glad he was feeling better today.

What amazed me most was the six Orange County sheriff's who lift Michael out of the boat for breakfast and back onto the boat to continue the cruise with Michael still in his wheelchair and no wheelchair lift. Lifting Michael was amazing. The showed strength, worked as a clear team, kept him level and safe, and lifted him smoothly both times. That was just awesome to see. Michael thought it was great fun, putting both hands up in the air and declaring "I am King" loud and clear. It was a good laugh for everyone.

Joseph went to bed on oxygen and monitors not feeling good. He has been on an event monitor for his heart, so we recorded an EKG of his heart which the doctors will review in the morning. Up until now, the recordings of his heart have been nothing to worry about, alluding to the fact that this may be his pulmonary hypertension acting up. We pray this is still the case. I will surely follow up with the doctors in the morning to see what they say about the recordings. Praying that sleep is all Joseph needs.

May God Bless Your Journey,
Jennifer Richardson

The Rich Man and Lazarus

Luke 16:19-31 'There was a certain rich man, which was clothed in purple and fine linen, and fared sumptuously every day:
'And there was a certain beggar named Lazarus, which was laid at his gate, full of sores,
'And desiring to be fed with the crumbs which fell from the rich man's table: moreover the dogs came and licked his sores.
'And it came to pass, that the beggar died, and was carried by the angels into Abraham's bosom: the rich man also died, and was buried;
'And in hell he lift up his eyes, being in torments, and seeth Abraham afar off, and Lazarus in his bosom.
'And he cried and said, Father Abraham, have mercy on me, and send Lazarus, that he may dip the tip of his finger in water, and cool my tongue; for I am tormented in this flame.
'But Abraham said, Son, remember that thou in thy lifetime receivest thy good things, and likewise Lazarus evil things: but now he is comforted, and thou art tormented.
'And besides all this, between us and you there is a great gulf fixed: so that they which would pass from hence to you cannot; neither can they pass to us, that would come from thence.
'Then he said, I pray thee therefore, father, that thou wouldest send him to my father's house:
'For I have five brethren; that he may testify unto them, lest they also come into this place of torment.
'Abraham saith unto him, They have Moses and the prophets; let them hear them.
'And he said, Nay, father Abraham: but if one went unto them from the dead, they will repent.
'And he said unto him, If they hear not Moses and the prophets, neither will they be persuaded, though one rose from the dead.'

Sometimes it is easier to turn a blind eye than to help someone you know in need. I challenge you next time you see one of those guys holding a cardboard sign to offer a bottle of water or can of soda. What would it hurt? If you know of a friend in need, offer help.

In times like these, we are challenged to be more like Christ, not less.

God bless your journey,
Jennifer Richardson

Michael's Italian Chicken - Wheat Free, Gluten Free, Soy Free, Egg Free, Milk Free, Nut Free

Michael's Italian Chicken

Ingredients:

1/4 cup olive oil
boneless skinless chicken breast about 1 pound
1 teaspoon each of: marjoram, thyme, rosemary, sage, oregano, and basil

In a bowl mix all the herbs together.
Cut the chicken in chunks.
Then roll the chicken in the herb mix.
Pour the oil into a frying pan. Turn the heat on low.
Place the rolled chicken into the frying pan.
Use a spatula to turn the chicken regularly.
The chicken comes out very tender. For crispier chicken, cook longer.
Cook the chicken until it reaches 165 degrees and is white in the middle.
Enjoy and eat.

Michael really likes this, and it is easy to eat with lots of other foods. It is also salt free and low cholesterol.

God Bless Your Journey,
Jennifer Richardson

Easy Gluten Free Smoothies

With the discovery of Michael's serious and complex food allergies, I have created my first gluten free recipes for him. We enjoyed them and found them very filling. You can easily take this recipe and pour them into either popsicle molds or ice cube trays to make juice bars or chocolate popsicles for treats.

Pear and Applesauce Smoothie:

1 can of sliced pears with juice (or for a sugar free version use 2 whole pears and cut in slices)
( I used Del Monte since the ingredients are very simple)
1 cup of applesauce or 1 whole apple cut in slices
8 ice cubes
1 tablespoon orange honey

Blend and serve. Makes about 2 small cups. For more servings, double the ingredients.

Alternatively, for a chocolate version, you can vary this recipe easily.

Chocolate Pear and Applesauce Smoothie:

1 can of sliced pears with juice
( I used Del Monte since the ingredients are very simple)
1 cup of applesauce or 1 whole apple cut in slices
8 ice cubes
2 tablespoon orange honey
1 tablespoon cocoa powder

Blend and Serve. Makes about 2 small cups. For more servings, double the ingredients.

Recipes Created by Jennifer Richardson
www.academyofthepossible.com
www.richardsonstudios.com

Thank you Lord that you are not done with me yet.

Thank you dear Lord for the opportunities you give me every day to practice patience, to act more loving, to be kinder, to show greater compassion, and to learn better how to follow you.
Thank you Lord for loving me in my imperfection for who I am.
Thank you Lord that you are not done with me yet.
Amen.

Jennifer

"...most beloved, remember what the apostles of Christ Jesus, our Lord, announced to you.But, dearly beloved, build your life on the foundation of your most holy faith, praying in the Holy Spirit. Remain firm in the love of God, welcoming the mercy of Jesus Christ, our Lord, which leads to eternal life."Jd 1:17, 20b-25

Dreams and Determination

Shawna was counting her money. Michael walked over to her and said "If you save your money, you can buy (something for her gameboy) at the store." Shawna assertively and clearly said, " No, I am saving all my money, so I can buy my own unicorn or a baby unicorn!"

Oh, that is so cute.

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

Praise Report

Thank you Lord!
Joseph had a wish day and became a police officer.
Thank you Lord!
Michael had a wish trip and went to Walt Disney World in Florida.
Thank you Lord!
We all managed to get home after a tumultous adventure. (Read my earlier post on this.)
Thank you Lord!
The wish team was just awesome. We were blessed by angels who kept us safe.
Thank you Lord!
Mark and Roberta came home safely after being gone for several weeks.
Thank you Lord for the blessing of friends.
Daniel, Cecile and Brian have been incredible in keeping the worship, pray, and bible study going.
Thank you Lord!
Gabriela has taken a more active role in washing, brushing, feeding and watering the dogs.
Thank you Lord!
Michael got both of his wheelchairs, electric and manual.
Thank you Lord!
Michael's wheelchairs save him so much energy.
Thank you Lord!
We have been blessed by free boxes for packing.
Thank you Lord!
We have water, electricity, and food in the frig.
Thank you Lord!
We have clean clothes and a roof.
Thank you Lord!
We have friends who love us.
Thank you Lord!
We have SSI who helps keep the lights on etc.
Thank you Lord!
Physical therapy is helping Michael maintain the strength in his muscles, gain strength he has lost from having multiple daily seizures, and works on his balance and gait.
Thank you Lord!
We had the wonderful opportunity to give household items and clothes we no longer need to the ministry for Mexico.
Thank you Lord!
We have two beautiful daughters.
Thank you Lord!
We have three handsome sons.
Thank you Lord!
Scott and I have been married 11 years (12 in December).
Thank you Lord!
We caught a mouse the other day. Uggggh!
Thank you Lord anyway.
We shredded a lot of unnecessary paper we had been saving.
Thank you Lord!
We gave books we no longer read to the library.
Thank you Lord!
We had a garage sale, didn't make a dime, but the neighbors enjoyed receiving some items they could use.
Thank you Lord!
Thank you Lord!
Thank you Lord!

Ages

Michael is now 14. Gabriela is now 12. Joshua is now 7. Shawna is now 4. Joseph will soon be 9.

Yeah!!!! I cannot believe how big they are all getting.

Jennifer
www.richardsonstudios.com
www.academyofthepossible.com

Birthdays

Birthday are quite a feat for us because they are all so close together 6 of them plus Easter all with about 2 months of each other. Joseph is the last of the family within the calender year, so waiting is the hardest for him. We have a calender to count down the days, which really helps a lot. He is faithful at circling each day that goes by.

We gave the kids a choice this year as to what kind of cake they wanted. With all the craziness, I didn't make them. We just bought them. With so many birthdays close together, we let the kids choose a larger cake to share or a smaller cake personal sized cake just for themselves. Joshua chose a personal spiderman cake. Michael chose a large spiderman cake. Shawna chose a personal Tinkerbell cake. Gabriela chose a large chocolate cake with oreo cookies on top. It will be interesting to see what Joseph chooses.

Happy Birthday to all my beautiful kids.

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

Clean Groomed Pooches

Our pet sitter and her friend surprised us with a gift and had all 3 dogs washed and groomed at our house. They all our nice and fresh, clean and cut. I have learned how to cut them myself, but just have not quite got the nack of their faces. It was very nice to have the feet and face of the poodles shaven, and all their nails cut. They gave us the works.

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

Kittens in the Engine

Yes, seriously. We have 3 stray cats in the neighborhood that come in and through our yard frequently. Well, they had a lot of kittens. 10, we think. 3 of them decided to climb up into the engine of Scott's car under the engine block. We had quite a time getting them out. We asked animal control if they would help. No, they said. They don't deal with cars. Of course, the mechanic doesn't deal with cats either. We finally dawned heavy gardening gloves and lured them out with smelly fish and tuna kitten food. It took 3 solid days to catch all 3. We took them to the animal shelter who said they would be fixed, washed, fed and hopefully adopted out. They were entirely cute. The kids, of course, fell in love with them.

Jennifer Richardson RN
www.richardsonstudios.com

Possible Move to Fl.

I have not been able to reach anyone at all in the office after calling, emailing and leaving messages. My experience tells me that that means I probably didn't get the job because someone should be able to answer the phone, but maybe they are on vacation. Meantime, Scott is actively looking for full time work in computers or electronics. We are still looking for a house we can afford to live in with 5 kids and 3 dogs. Please pray the Lord will guide us and show us where he is leading us and open divine doors for where to move.

Jennifer

You ask me a method of attaining perfection. I know of love - and only love. Love can do all things. -- St Therese of Lisieux

Anhidrosis

Can the lack of sweating be dangerous? The answer is yes. This condition is called hypohydrosis or anhidrosis. To learn more, click on the link above and read the article from the Mayo Clinic.

Why information on anhidrosis?

Well, anhidrosis can be very difficult to diagnose. I had to hunt to find the name of this disease. There is more than one cause.

Scott and I have noticed though that Michael does not sweat at all except the back of his legs in his braces. Otherwise, his skin gets hot and dry and red. This is particularly noticeable in his face. We also have noticed that ice or cold water applied to Michael's face stops his seizures. It has worked every time I have tried this with him. I am wondering if there is a connection. I have started inquiring with the doctors.

Jennifer Richardson RN

Epilepsy Misunderstood

I think to have someone tell you that you need to discipline your child better and teach them how to behave properly after they have just had a seizure is evidence of the lack of education the public has on epilepsy and how devastating this disease can be to families. I also believe it is just cold hearted. Epileptics need control of seizures without side effects, but EPILEPTICS NEED A CURE! I personally believe it is the responsibility of the neurological, neuroscience, epileptoligists and neurosurgical community to not only try to find a treatment, but to also try to find the cause and the cure. Often there is a cause which is treatable. Many times there is not, but you won't know unless you check.

Jennifer Richardson RN

“To fall in love with God is the greatest of all romances; to seek Him, the greatest adventure; to find Him, the greatest human achievement.” -- St. Augustine

Wish Trip

Michael was amazingly blessed to receive his wish to go to Walt Disney World in Orlando, Florida this past April 2010. The trip to Florida was a challenge and an adventure. Although Michael still says he wishes he could have had his first wish for ABC Extreme Makeover to come or an RV to live in since we are losing our home, he definitely had a fun time there. The staff and all the people involved to make this happen were just amazing. Michael's favorite ride was Space Mountain and Test Track was a close second. I enjoyed Test Track as well. There was plenty to do, and the free all you can eat ice cream shop at Give Kids The World was a favorite. Make-A-Wish tried really hard to make the trip extra special. What an awesome group of people. The kids enjoyed it. Shawna liked the Cat in the Hat ride at Universal Studios Dr. Seuss land. Michael got to meet Spiderman, Captain America, Rogue and Storm superheros backstage with a picture and autographs as well as Mickey, Pluto etc at Disney. I thought that was superbly cool. My suitcase was lost the first two days by Southwest who found it later and sent it to me. My saving grace was the washer and dryer in the villa we stayed at in Give Kids The World resort with free laundry detergent. Scott enjoyed the tour at Kennedy Space Center until they lost Michael's wheelchair. Some park guest had stolen it out of their secure area. Praise the Lord, they found it about an hour and a half later. Joseph liked the Spiderman ride. Joshua liked the Mission to Space ride. Gabriela says she also enjoyed Space Mountain the best. Between wheelchairs, medications, reactions to chlorine in the swimming pool, Michael's food getting stuck (esophagitis), breathing treatments, oxygen on the airline for Joseph, seizures and daily poopy accidents with some of the kids, honestly I was quite tired. We went to Epcot on Spaceship Earth. Shawna had a blast pressing buttons and pressed Spanish. The whole ride I could not understand it. There was no way to change it to English, and I was nearly in tears. I liked the Ferry ride Disney had between the ticket area and the park entrances mostly because all I had to do was stand there and enjoy the water and the evening view of the lights. It was pretty and relaxing. Getting home was interesting. Joseph had trouble breathing at the end of the flight, so when the plane landed in Kansas City, MO, we called cardiology. He was already on oxygen, so he could not fly. We drove home because he seemed stable on room air. We thought it was just altitude on the plane. Well, as we got into OK and TX, Joseph had trouble breathing (RR78, pale, complains he can't breath, O2 sats in the 70's in the literal middle of nowhere while we are driving). We put him back on oxygen at 2.5L with the oxygen concentrator that had been rented for us. He stabilized, so we kept going. He was ok as long as on the O2. Not thinking anything about the altitude of the states we were in, we finally figured out that was the issue. Altitudes ranged from 3600 to 7700+ feet in elevation. When we hit New Mexico, the oxygen concentrator failed. We had to wait for another one to be overnighted as we had become aware that from Santa Rosa NM to Flagstaff AZ elevation only continued to go up from 4400+ feet to over 7700+ feet. Joseph could not make it home without it. We were only glad to finally make it home on Michael's last $50.00 for gas without having to lifeflight Joseph out to an out of state hospital. Michael was pleasantly surprised by a limo ride home when we returned the rental car they provided. We were pleased to learn they would reimburse us for all our expenses on the trip home. The emergency contact person stayed in regular contact with us while we drove home and was our guardian angel. I feel like I need a shirt that says I survived Walt Disney World or something. It makes me appreciate the simplicity, if you will, of relatively local vacations. Joseph can't fly ever without being on high rate oxygen because a concentrator won't cut it for him. His left ventricle is weak. Pulmonary saw him when we got home. It appears he may have some asthmatic type of component to his heart and lung problems, so he is on breathing treatments twice daily and for difficulty breathing as needed. He is not your typical asthmatic, so I didn't even guess. We found out he actually strained the sternocleidomastoideous muscles in his neck from working so hard to breath, and is still recovering from that. The pediatrician says Joseph should simply not be going to altitude. Pulmonary is trying to get us oxygen for him for his episodes when he desaturates into the 80's; and so far, he is not in the hospital or emergency room and relatively stable. Considering that he has already had two close calls in his life, once being "reanimated" after heart surgery at 9 months old and once after a heart cath, Joseph is a miracle boy. Michael is still having seizures, and will be going back into the hospital the end of this month or beginning of June to try again and figure out why. We are trying to short sale the house. We don't know where we are going. Not being able to move to elevation and needing to stay close to good medical care really limits us a lot. At least, we have until the 28th. We know there is no sale date for the house between now and then. As far as mortgage companies go, HSBC sucks. They are cold hearted. Their idea of a "modification" was a payment $600 over what we even bring in in a month. On the brighter side, Michael gets his electric wheelchair tomorrow. I am thrilled to not have to carry him anymore; his 83 pounds have taken their toll on my back. He just is way to big now for strollers and grocery carts. Poor kid. I will be glad to let him do things that make him feel more independent and "walk" in the store or mall without help. I don't understand the problem with his muscles, but he gets so tired that he falls a lot and has resorted to crawling on his knees. With all the medical complications, Scott and I have decided it is simply a medical necessity for me to be home with the kids. Scott is still looking for work, so we are trying to find a way to make it on one income. I didn't think I would be so long winded, but there you have it. His trip to Walt Disney World was extremely trying and extremely fabulous at the same time. I am so glad that he got to go, and I must admit I enjoyed being able to get a chocolate milkshake any time I wanted. If I ever had to do it again, I would insist on helpers to come with us.

God Bless You,
Jennifer Richardson

Eosinophilic Esophagitis

Michael has Eosinophilic Esophagitis. It makes eating quite a challenge for him. I found it interesting that many symptoms we thought we separate disorders like GERD are actually all related to this. According to the American Partnership for Eosinophilic Disorders at http://www.apfed.org/ee.htm ,

"Common symptoms include:
Reflux that does not respond to usual therapy (medicines which stop acid production in the stomach)
Dysphagia (difficulty swallowing)
Food impactions (food gets stuck in the esophagus)
Nausea and Vomiting
Failure to thrive (poor growth, malnutrition, or weight loss) and poor appetite
Abdominal or chest pain
Feeding refusal/intolerance or poor appetite
Difficulty sleeping

The reactions to foods are not always ‘immediate hypersensitivity’ (IgE-mediated). This means that a food can be consumed with no obvious reaction to it, but over a period of days to weeks the eosinophils triggered by the food will cause inflammation and injury to the esophagus. For this reason, food logs (keeping track of foods and symptoms) may not identify the offending food."

Testing is in progress to determine the best treatment for Michael, and we will know more at the end of the month. I pray whatever the treatment is helps relieve his symptoms, the gagging, the food getting stuck, and the choking on food that he deals with every day. Michael has every single symptom on that list, and I was amazed they are all related to this EE.

Jennifer

Easter!

He is Risen! He is Alive!

Happy Easter!

We felt the earthquake all the way from Baja California. A 7.2! It was rolling quite a bit. Even in Huntington Beach as we celebrated McDonald's with family at Easter, it was rather unsettling. We still enjoyed a nice day praising our Lord for saving us.

Jesus did not come for the righteous; he came for the sinners.

Praise the Lord.

Wheelchair Brings Mobility!

Today was a day of small and big victories and praise reports. Today, we also found out that the ramps, manual wheelchair, and electric wheelchair for Michael have been authorized and approved. He weights 75 pounds. When he can't walk, giving him piggyback rides gets tiring rather quickly. Praise the Lord - we are awaiting an estimated delivery date!
For Michael, a wheelchair brings mobility and more independence!

We are praying for a wheelchair van that would fit all of us.

Praise the Lord!

Jennifer Richardson RN
www.richardsonstudios.com
www.academyofthepossible.com
www.richardsonstudios.blogspot.com

No fractures!

March and April have been rittled with seizures for Michael for the most part. Michael was fortunate, we found out today, to avoid fracturing his spine in a traumatic sprain / strain injury at the park where he fell hard on his bottom and back first off a slide and then a fall withinin the same week in the bathroom due to an atonic seizure (loss of all muscle tone) causing him to crumple and hit his head twice, once on the sink, once on the tub. This was the first full body atonic seizure he's had, although he has had other partial atonic seizures before now, limited to just his head. We are fortunate to have a visit scheduled this week with an pediatric epilepsy specialist. His back (a soft tissue injury) from both injuries, according to the orthopedist, could take up to 4 to 6 weeks to heal.

Praise the Lord - no fractures!

Jennifer Richardson RN
www.richardsonstudios.com
www.academyofthepossible.com
www.richardsonstudios.blogspot.com

Birthday Surprises!

Scott had his birthday today. We celebrated at a new Bob's Big Boy today through the kindness of friends. Going was a surprise for Scott, and he enjoyed it quite a bit. It was a lot of fun, especially since we had never gone. Scott was gifted by an original yoda drawing by Michael, which was most special among his other gifts. It was a special birthday dinner indeed. Bob's Big Boy brings back fond memories.

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
www.richardsonstudios.com
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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
www.richardsonstudios.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
www.richardsonstudios.com
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www.academyofthepossible.com
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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
www.richardsonstudios.com
www.shop.richardsonstudios.com
www.academyofthepossible.com
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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
www.richardsonstudios.com
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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
www.richardsonstudios.com
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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
www.shop.richardsonstudios.com
www.academyofthepossible.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
www.academyofthepossible.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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www.academyofthepossible.com
www.richardsonstudios.blogspot.com

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
www.richardsonstudios.com
www.shop.richardsonstudios.com
www.academyofthepossible.com
www.richardsonstudios.blogspot.com

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
www.richardsonstudios.com
www.shop.richardsonstudios.com
www.academyofthepossible.com
www.richardsonstudios.blogspot.com

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
www.richardsonstudios.com
www.shop.richardsonstudios.com
www.academyofthepossible.com

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