Bug went to the geneticist last week. We did get some fresh information. They know of two other kids who have similar deletions like Bugs. There is some slight variations in the deletions. Unfortunately, that's all it takes to make it so different sometimes. The good news is that its the closes we have seen so far. The others have different symptoms and a few alike. They still don't think Bug has Kabuki Syndrome. It looks like it's a debate with some other kids also. 

Last year they came out with a new genetic testing that they would like to have Bug do in the future. Since the procedure is only around a year old the Dr. feels we should hold off until there is more information put in the data base. He is thinking in a year we will do it. The Dr. also feels that we should visit once a year now since her symptoms have changed so much since 2009 and also we have some other kiddos to base her off of-well somewhat. It's the most we have ever had.

Awhile back a few Dr.'s felt that Bug should be put on a feeding tube due to her failure to thrive an other issues. The feeding tube  didn't happen in the end due to some issues. The geneticist felt strongly about that issue and said, "that we should not put her on any feeding tube in the future with out the Dr. calling him first." He explained to me why and said, "he wants to be involved in the issue if it comes up again". He had some interesting speculations that made sense.

We still don't know much and I am okay with that. My prayer was that God's will be done and I trust that He is in control. The good news is that some information could come available in the future. We have a few immediate things that the Dr. wants us to follow up on but other than that we are hopefully done with it for a year with the geneticist. 

For those of you who know and have been praying for Bug this last week-Thank You. It has been a crazy two weeks. Especially last Tuesday. It was kinda scary.

She has been having a lot of issues out of her ordinary things these last two weeks. Last Tuesday it was real scary and bizarre. She was passing out and going to sleep, having slurred speech, and difficulties talking and basic functions. She couldn't even navigate walking up the stairs. She was having a hard time just trying to walk. Along with extremely heightened behavior issues. She was off the wall. I don't even think she knew what she was doing.

I took her to the Dr. to rule out another stroke or if she was maybe having seizures. They ruled out a stroke. He doesn't believe she is having seizures. However we may do a follow-up with the neurologist here soon.

They did find that her blood pressure is extremely low and they don't know why or what is causing it. Which it could be causing Ann to pass out, speech and some of the other issues she is experiencing. As you can imagine we will have to go to another specialist! As usually they just don't know. The story of Bug's life-now one can explain her medical issues and what is causing it.

Little Man is having a very hard time with all of this as she has been brutal to him. His little heart is broken and he is worrying about her. Keep him in your prayers also.

  

Thank you for all your prayers!

My week in review will not happen this week. I am going to carry this week into next week. Monday only Little Man got any school done. It was for a good reason that Bug didn't get any school done. Tuesday we did school. The rest of the week was appointments and everyone being sick.

I got a call last Saturday from a friend who I haven't talked to in over a year. She had stopped homeschooling some 2 years ago. She had told me that she was going to get rid of her books then. I guess she never got around to it. She informed me that I was on her heart all week and wanted me to come over and have all of her homeschooling material. She told me I can keep it, or give away what I don't need. Which we believe in tithing off everything.

The prior week I was looking at our homeschool budget for the following year. Yes, we have to plan and save all year to purchase curriculum and other school supplies. I could already tell that I was going to be very short on funds and not have as much as I usually have. I prayed and asked God to help in this area to give me wisdom in finding it used if needed or just to provide for our needs. I also use Sonlight as my core curriculum and it is pricey. I love it, my kids love Sonlight also. I was willing to change curriculum if HE closed the door for me to buy it.

My friend used Sonlight and also has two older children who are special needs. I had no ideal what she had.

Wow-did he answer my prayers in double portions. God is so good. I didn't even realize how much she had. Not only did he provide my Sonlight Core D for next year and most of the Sonlight Science 3 for next year. I have Core E and then she had another core that I won't need for a few years. I just have to find a few items that are missing in every core or replace the consumables.

I have the next 4 years of Math U See minus the student workbooks. The fraction inserts for MUS, plus more blocks. Which solves issues having two sets for the kids.( its a Bug thing with needing her own space and others not reaching in by her-special needs kiddo) All kinds of Apologia science books, grammar, encyclopedia's, atlas, other curriculum's and so much more than I could of imagined. We have the equipment for doing science experiments with the beakers and such. It is easily around 3,000. worth of homeschool stuff. It is official my school room is packed with books and other things to the max!!!!! I have no more room and I have to get very creative. I am giving away quite a bit of material and it is still stuffed. 

We now have a microscope with all kinds of supplies. At Bug's birthday party this last weekend we had a conversation over entomology and we were talking about how neat it would be to have a microscope. God is so good and I am humbled by this answered prayer that went way beyond what I prayed for.

I called up my friend and shared everything. She told me that she was going to ask me some 2 years ago if I wanted the books- she just forgot and never got around to it. She also told me that I would of probably said no then. Which was true because I didn't need it then and would of rather her blessed someone else. Then she said, " God made me forgot or to busy to get it all together until this week because He knew that you would need it now!" No wonder God put me on her mind this week HE knows the past, future, and present. Thank you Lord for providing for our family abundantly.

Bug is still complaining of pain in her knees and she has also mentioned other joints in her body lately. When she wakes up in the morning she says she feels stiff. The therapist and I have noticed a change in her walking and other movements. We have even taken her out of PE for awhile.

Some of you may remember that almost a year ago Bug was hospitalized because of the knee swelling and a high fever. The doctor's at the hospital never could figure out what was wrong with her. The pain seems to come and go. She has always for several years had strange fevers that come out of nowhere with no other symptoms.

We are going to have her checked out by a pediatric arthritis specialist next week. Reading on line I see some things that make me think she may have some form of arthritis, but then her symptoms don't have certain attributes either. I don't know what I think about it. All I know is my little girl is complaining of pain in her body. Bug is such a trooper with everything. I just ask for your prayers that the specialist can figure out what is causing all her pain in her joints. I don't want it to be arthritis. I also want to know what is causing the pain. God is in control and whatever it may be I know he will be with us.

Our friends son who has been fighting ballistic leukemia for the last few months is in remission from the cancer. God is so amazing. Last week, the mom told us that his blood work has no cancer in it. I don't quite understand it all but she said, "that he can go back to school in February and he can now be around other children. He will have to take some type of medication for the next two and half years. No more chemotherapy. God is so faithful when we seek him. I know a lot of people have been lifting him and his family up in prayer. Praise God. I am so glad that we serve a loving God who takes care of us.

There is a word in any language that is the most dreaded, it doesn't matter how old or young you are. Cancer or leukemia. It makes your heart stop. Even with the hope of our Lord and Savior it is still such a word that can bring tears, worry and even fear.

Late last night, we received a call from a friend who is like a daughter to us. When we lived in Colorado her and her children lived with us for a few years until she got married. Over the last year we lost contact. She moved and lost our number and we haven't talked for awhile. A few days ago the Lord put a heavy burden on my heart to try and find her. The Lord reminded me of where she had just started to work and the details of the department. When I called I was only able to leave a message. In Gods great plan-yesterday her boss asked her to put a message on her phone to forward all messages until further notice. She wouldn't of got the message if I would of called the day before or even after today. God's timing is always perfect.

They just found out a few days ago that Andrue their 5 year old son has Acute Lymphocytic Leukemia. If I understood correctly his leukemia has not gone to the bone marrow or in the spinal fluid. I guess with him being a boy he will have 3 years of treatment. I don't know Andrue the way I do the other kids-this son being a result of her marriage. I know that the other kids are having a hard time.

This is any mom's worst fear. Having to see your baby suffer and having to go through the pain of the chemotherapy and the other things he will have to endure. When is able to go home they where told for 6 months he will be pretty much isolated from other kids because his immune system will be very weak.

When I got off the phone last night I just wanted to wake up my kids and go and hug, hold and kiss them. I know when they wake up I am going to hold them that much more. Then I tossed and turned in bed praying and my mind racing. I thought of how busy I have been this summer putting together the school year and how much time I have missed playing with my kids. Not that planning out the school year is bad. I haven't sat down with them as much as I normally do. It made me examine my time. In the end what matters the most-the heart. At our homeschool convention this year we had a speaker and the name of the workshop was "In the end what matters the most is the heart" her 6 year old daughter died. To me what is more important is my children's heart. I want them to have a tender heart. One that listens to Yeshua. I choose to homeschool so I could nurture them and spend time with them. I would rather their heart condition be in order than the math facts. So, now I see that though all of Bug's obsessions of wanting me look at every bug and bird this last week that I have blown her off. All she wanted to show me was a silly bug or bird. That is the same thing she shows me everyday for the last few years. Its important to her and I took her joy away from not being interested in EVERY one. Little Man wanting me to sit down and play with him. It's not that I haven't played with them its how much I have and also my heart. My mind was more preoccupied with curriculum than my children's joy and heart.

Stop what you are doing and go and give your children a nice long hug and kiss. Life is so precious. We have been given a wonder gift in our children and they are on loan from God. We don't know how long we have them in our care. Its so easy to get sidetracked in this life. My heart goes out to this family that during this time that the Lord will draw them closer to Him and to each other. That He will help them to cope during this difficult time.