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Sunday, November 15, 2009

Be thankful to the Lord

This year, as in 2003, our Thanksgiving table will not be complete. My daddy is serving us in Afghanistan. We will think of him and pray for his safe return that day and everyday. Please keep him in your prayers and trust the Lord to bring him home safe. Thank God that we live in a country where people are willing to fight for our freedom. Thank God we have plenty of food and will have a feast on Thanksgiving to celebrate all that God has blessed us with. Never forget where it all comes from.

Watch this video.

Thursday, October 22, 2009

Update on my health

I am not doing well. I started on thyroid meds 2 months ago and they are not helping. I am getting worse. Went to the doc on Tuesday and he said that there is something else going on in addition to the thyroid so we are looking for answers. My heart rate jumped from 80 when laying on my back to 115 when I sat up. That would explain why it feels like my heart will leap from my chest every time I do anything physical like walk up the stairs. He is sending me to the cardiology clinic and has ordered a echocarddiogram and a Holter monitor to wear for 24 hours. He also ordered some labs. He prescribed a beta blocker to try to keep my heart rate more steady and an anti depressant to get me by until he figures out what is going on. I do not like the way the beta blocker is making me feel, so I will be calling him back today. I think this has to do with my adrenal gland in addition to my thyroid. They often will both have problems because one depends on the other for proper function.

Do You See Me?

The last little boy on this video has CdLS, which is the syndrome that fits Katy best. This video made me cry. These babies are perfect in God's sight.

Friday, October 2, 2009

As a mom-The sisterhood of the mommy patriots

I was watching Glenn Beck and saw a mom, just like the rest of us who decided to start a website to connect moms to stand up for America called www.asamom.org. This blog has been rather non-political, but I can't keep silent anymore. I took an oath to protect this country and her constitution with my very life and now it is being torn to shreds by those we elected to represent us. I want to secure a future for my children to live in liberty and the pursuit of happiness. Equal opportunity, not equal possessions. I was brought up to believe that people do not appreciate things that are given to them; they have to work for them in order to fully understand how important they are. Liberty is no different. Our forefathers put their lives on the line to grant us liberty in our constitution, yet we are complacent. This country was founded on the premise that God created us all equal and gave us certain inalienable rights. A portion of the Battle Hymn of the Republic says it all: "He died to make men Holy, let us die to make men free". Americans value the liberty of themselves and others above their own lives. I went to a Tea Party on 9-12 and a veteran of WWII spoke. I will never forget his speech as long as I shall live. He was in charge of the group of American soldiers who discovered and liberated the first known Nazi concentration camp. He said that when he and his men went into the camp the prisoners there were terrified. He screamed out, "We are AMERICANS!!" A cheer roared out from the crowd because they knew they were freed. We are still AMERICANS and we will fight for liberty at home and abroad until the Lord returns for those who have accepted Him.

Friday, September 18, 2009

Katy got approved

We have been trying for years to get some help with Katy's care. There is a program called the Elderly and Disabled Medicaid Waiver program that I signed her up for. The first time they said she didn't qualify, but the second time I talked to a Social Worker who went to work to make it happen. Katy was approved this time. The program allows medically fragile people to remain in their own homes being cared for by their own families by providing help to make it easier on the family. When families can't do it anymore the people are put into expensive institutional care, which ends up costing more and no one is happy with the situation. These programs ensure that people with disabilities have choices for their own residence and daily care needs. I was very hesitant to sign up for this program even though it would be a big help because I would have to have a stranger come into my home and care for my medically fragile child or so I thought. Turns out that I can choose my caregiver if they can get hired by the agency chosen to provide the services. Tara, my sister needed a job so I referred her to be hired and they hired her. She comes each afternoon and helps with keeping Katy's room, bathroom and play room clean as well as changing her bed linens and washing her clothes. She gives her her bath, lays out her clothes for the next day and plays with her. She also provides respite care 4 hours per week. Respite care is a sitter so we can spend time with other children or go out and have fun without worrying. I get to focus on Sean and J.D. and know Katy is well cared for. The social worker called yesterday and asked how it was going. I said, "Well I don't feel like I am so busy I can't breathe anymore."

Thursday, September 17, 2009

What it means to me to be a caregiver

I am a wife and mother. I have 3 children; they are my life. Caregiving is not a job, it is not a mandate, it is a calling. I was an everyday kind of lady before I became a mother. Even when I had my first child I never suspected I would be called a caregiver, a mother yes. I watched that precious baby and knew he was all that mattered anymore. Little did I know what that would really come to mean to me as time passed.

Then I had a beautiful baby girl and as soon as she was born it became apparent that God had called me to be a caregiver. She was born with disabilities. She was whisked away to a hospital 2 hours away and all I could do was cry and ask God, "Why my precious baby?"

I soon joined her in the NICU at Children's Hospital. I knew she was in good hands, but I was her mommy and she needed me. When I saw her tiny little body in that isolette with tubes and wires everywhere, I wondered how I was going to "mother" her in this environment. I was there every minute they would allow me there. She had test after test after test. They still, 6 years later, don't know why she faces the challenges she does. It felt as though she was not mine at times. I felt so removed from her, she seemed so fragile, but I LOVED her with a mother bear kind of love.

She finally came home from the hospital about a month later and we settled in. Things did not get easier, I worried about her every minute of the day. We had so little information about her condition, just fragments of a still unsolved puzzle. We really didn't know if she would survive. She absolutely detested feedings and would scream and refuse and as a result did not grow well. She turned blue a time or two and scared the life out of me. My husband and I were so exhausted from the night feedings and the stress of a special needs baby. We couldn't reach out for help because no one seemed to understand how to help. That first year is quite the blur. My beautiful daughter had 76 doctor appointments in a city 2 hours away from home that first year. Our finances were terrible and our debt was soaring. My husband and I made a commitment to keep the connection that had created these beautiful children. We actually grew stronger through it, although it didn't feel like it at the time.

Then out of the blue it seemed, I began to notice that my oldest son was not progressing as he should. I searched frantically for answers and came to the conclusion that he had autism. I asked his doctor about it and was told that after all we had been through that he was probably just having a hard time adjusting to life with a special needs sibling. I knew in my heart he was wrong and self referred to the early intervention program for both children. We took my daughter to the neurologist who was following her for a bleed in the brain during the neonatal period and the doctor asked if we had my son evaluated for autism yet. I knew then that I had been right all along. That doctor diagnosed my son and we got him the help he really needed.

My daughter's feeding completely dominated the whole household all the time. Then I went to her pediatrician's office for her 9 month check up in tears. I calmly explained that my baby needed a feeding tube right away. I had given it my best shot, but I just couldn't force her kicking and screaming anymore just to get enough food into her to keep her hydrated. She had stopped growing and I just didn't know what else to do. The day that she got her feeding tube was the first time that she smiled at me. She was 10 months old and had smiled at her daddy and her granny, but not me. She smiled at me that day and I will tell you that was the very moment when I just went head over heals for her. It was as if she said, "thank you mommy, this is just what I needed."

We went on for a long time running from doctor to doctor, tube feeding after tube feeding. She was so developmentally delayed and was falling farther and farther behind. I was sad for her, but also loved her just the way she was. There is nothing on earth that is more joyous than this little girl's laugh. She has fought hard for every milestone and is happy through it all.

I had my 3rd child(a son) when my daughter was almost three years old. She was in a wheelchair, completely dependent. My oldest son(4 years old at the time) was making progress, but still quite the challenge to care for. I was so busy I didn't have time to think or breathe, but my joy was complete. My youngest son is so compassionate, so giving. My youngest son taught his big sister how to walk and his big brother his first words since he stopped talking at 18 months old.

My children, all three of them, have taught me lessons that I would never have learned if I had not earned the title caregiver. Those who never earn the title cannot fully understand the joy, the pain, the laughter, the strength. This is the hardest work one can imagine, but also brings joy beyond measure. To see one smile from a little girl who has faced so much in her life is something beyond explanation. To see a little boy who tries so hard to accomplish things that seem to come natural to the rest of the world is a pride that transcends circumstances.

During those first few months of my daughter's life I prayed and prayed for God to heal her. My husband was praying the same prayers each day. We both over the course of time came to the same conclusion that it wasn't my daughter who needed healing. She was exactly who God had planned her to be. It was me that needed healing. It is often said that "God will never give you more than you can handle." Before I became a caregiver I believed that. Now I have been led into the realization that He does in fact give us more than we can handle so that we can learn to give it back to Him. We have to get past our own ideals and get into the fact that it really isn't about who we are, but how we love. If I had to choose I would choose this life all over again. It is all worth it to see these precious children learn and grow.

Thursday, August 6, 2009

Started treatment

Thyroid ultrasound is normal. Started on meds on Wednesday. They are making me nauseated, must take on empty stomach. I always get sick taking meds on an empty stomach. I hope I adjust and the nausea goes away soon, if not I may need to switch to a different brand of meds. Doc tested me for IgA, IgG and IgM, which he said was to check for celiac disease antibodies. Haven't heard results yet.

Saturday, July 25, 2009

A Little worried, pray for me

I went to the doctor last week after fainting. I have been having some weird symptoms that are rather non-specific. The doctor ordered some labs that came back abnormal. My TSH was elevated as well as my triglycerides. My HDL(good cholesterol) was a little low, but my LDL(bad cholesterol) was fine as well as my overall cholesterol. I have been diagnosed with hypothyroidism. From my research the triglycerides being high is because of the thyroid problem. I will be going for a thyroid ultrasound this week to investigate further. No wonder I have felt so bad for so long. Good news is that this condition is very treatable and I should be feeling better very soon. This could be an auto-immune disorder and might lead to further testing for other auto-immune diseases.

Friday, July 17, 2009

Been a while

I have been busy and not well so I have not updated in a while. I have been having some health problems that culiminated in me fainting yesterday so off to the dr. I went. I will be seeing a GI dr and getting some blood work done to try to figure out what is going on. Please pray we can figure this out and get it fixed.

Friday, June 5, 2009

We moved in

This house is so awesome. I wake up in the morning and wonder if I am dreaming. I just can't believe this beautiful house is mine! We are still getting settled in, but we plan to have a big BBQ when we get everything set up. Stay tuned for updates.

Wednesday, May 27, 2009

Moving soon

We heard from our people that we may be closing on the loan for the new house on Friday at 3:00pm. We may be moving in over the weekend! I am so excited, we have waited so long for this. My kids deserve a better home and we are finally getting it. I have been unable to update my blog lately because my back went out 2 weeks ago and I was unable to sit in my computer chair for more than a minute until today. There is much going on right now in the land of IEP(Individualized Education Plans) for the kids. I will try to update later, but it may be after the move. I will find out for sure tomorrow if we will close before the weekend. I will start getting utilities switched and such as soon as I know. We will be borrowing a truck and trailer to make the move quicker, but we have until the 24th to get all our stuff out.

Friday, May 1, 2009

Made me cry

Stumbled across this today and it is just beautiful.

Friday, April 17, 2009

pictures of the inside of the new house















Today we had an opportunity to go over to the new house and go through some items the sellers left behind. They told us to keep whatever we want and they will dispose of the rest. We got some pretty nice things out of the pile and the rest was personal items of theirs or junk. It was so nice to go over and spend some time there. We got a chance to do a little cleaning and it felt good to take care of this beautiful home for the first time. I noted some things that I would like to do when we move in and took measurements for the windows, refrigerator space, etc. We got our good faith estimate today and we already have saved enough to pay for the cash required to close. We got a locked in rate of 5%. Above are some pictures of the inside of the house.

Wednesday, April 15, 2009

We have chosen not to participate in the recession

We paid off our debt except our mortgage and are sticking to our budget. We are saving lots and lots of money to pay for closing and other costs for our new house. If everyone had a plan for times like these, a layoff wouldn't completely destroy their finances. Dave Ramsey helps people move from fear and anxiety to hope and prosperity even in a recession. Please make plans to attend a Town Hall meeting near you so you can see for yourself that this recession doesn't have to wreak havoc. Hope is a powerful thing and you can have it too.

Thursday, April 9, 2009

Monday, March 30, 2009

We signed the contract on the new house

If everything goes well we will close the first week in May.

Oh my goodness!

Katy will be wearing a hat for a while. Yesterday afternoon Sean took his paper scissors and cut off all of Katy's hair, she is almost bald. I cried, but she didn't seem to care at all. I know one day I will laugh at this, but it is not funny right now.

We Need a New R-word

Tuesday, March 24, 2009

We sign the contract tomorrow

She accepted our counter offer and now we will be signing contracts tomorrow. She is in a lease until July and will try to get out of it, but if she can't we will hold off her closing until the first of June. We have chosen a great house that meets our needs and has a very large wooded lot that will be a blast for the kids.

Monday, March 23, 2009

We have an offer

We had a lady come look at the house last week and yesterday she came back a second time with her dad. She has made an offer, but it is significantly less than we had hoped for so we will counter offer. We also will keep in mind that this is a tough market and will do whatever it takes to meet our financial obligations and still keep the sale negotiation going. We are so excited to see this all moving along. We are hoping she will not back out like the one lady did a few years back. This time she will have to pay earnest money so she will have much to lose if she backs out.

Wednesday, March 4, 2009

r-word.org

Please pray!

A lady came to look at the house yesterday. She is going to look at another house today and get back to us with her decision. She has cash so we will not have to wait on her getting financing. Another person will be looking at the house this afternoon also. Please pray we can finally get this ball rolling.

Monday, March 2, 2009

Here we go again

We are trying to sell our home again. I know it is a crazy time to do that, but it is also a great time to buy a house and we can get a much larger house for our money right now and eventually have some equity to put us in a firmer financial situation. The house we want is here. Now, if we can locate a buyer we will be moving soon. We are not going to make any money on this, but hey we might actually have equity one day, which is not gonna happen in this home.

Thursday, January 15, 2009

Report: Kids are restrained, secluded

Report: Kids are restrained, secluded

http://seattlepi. nwsource. com/national/ 1153ap_restraini ng_kids.html

THE ASSOCIATED PRESS

WASHINGTON -- Schoolchildren across the U.S. have been injured or killed
when they were restrained or secluded, a disability rights group says. A
House committee announced a hearing on the issue.

The National Disability Rights Network, in a report Tuesday, identified
cases across the country in which children, many of them with disabilities,
were traumatized, injured or killed at school.

For example, 15-year-old Michigan boy with autism died while being
restrained by four school employees, the report said.

In another case, a 13-year-old Georgia boy hanged himself in a locked
concrete seclusion room after pleading with teachers not to isolate him for
hours at a time.

The group said its report "is clearly just the tip of the iceberg" because
the government doesn't have any system of collecting data about these
abuses.

Rep. George Miller, D-Calif., chairman of the House Education and Labor
Committee, said he would schedule a hearing on the issue.

"This report raises serious questions about the treatment of schoolchildren,
the qualifications and training of staff, and what actions have been taken
to address these unconscionable practices," Miller said. "No child should be
at risk or in danger while at school, no matter what the circumstances. "

--

Tuesday, January 6, 2009

Recommendations for the new administration

The new administration has asked members of the disabilities communities for recommendations for the agenda in this area. Here is the Autistic Self Advocacy Networks response.

K3 is here

Amy and Kenny had their baby the other day on January 2nd. He is a beautiful little man and Amy and Kenny are thrilled to be parents. He weighed in at 9lbs 4 oz and was 20 inches long. Mom and baby are doing well. I don't have any pictures yet, but when I get them I will post. Congratulation Amy and Kenny on the birth of Kenneth Lamar Henderson III.

A Public Service Announcement

I just learned of a public service announcement produced by the Dan Marino Foundation, with support from the Autistic Self Advocacy Network. I really think this is wonderful, please have a look. Our life is touched by autism, not ruined by it!