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
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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
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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
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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
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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
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Us to the Lord:
"Lord, let Your Mercy be on us, as we place our trust in You." Psalm 33

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

A Prayer Request

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

Jennifer Richardson RN
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A Day of Miracles

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

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

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

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

Christ be with you,
Jennifer Richardson RN
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Words to Live By

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

Happy New Year 2010!

Happy New Year 2010!

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

From Mary, we learn...

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