Tick, tick, tick...

I am counting the days till back surgery. I am trying to get the family in order, and visiting with family, and friends. I am tired and lately my pain has been tough. I think I look a little older than 25...(hahahaha)
The kids had the weekend off from swimming. We all slept in !!!!!!!!
This is good since I can't sleep without help..

If you could I have specific prayers:
1) Emma has terrible eczema(spell?) I can get her something to help the itch, and see a dermatalogist asap.
2)the drs can get Skyes meds sorted before surgery.Less belly pain, and just pain in general.
3) guidance for the surgical team that will perform a non fda approved disc replacement.
4) my family will be safe, and get on with life smoothly with mom out of commission.

Thank you sooooo much.
I would appreciate if you asked frinds and family to pray for us:)
beth

Getting organized

This is Emma hard at work on Barbie.comIs this Miley getting ready for her fans???

Me and my girl. She is almost as tall as me!!!
Is this the Adams family???No, it is the Robertsons.
It is hard to believe only 2 weeks on Wednesday till surgery. I have the presurgical testing this week. I have to get approval from my Hematologist too. I really dislike needles, especially since it is almost impossible to find a nice vein to sink into.
I have been trying to get a list together for all of the families activities. Who goes here, who take medicine, who has tests, reports, responsibilities, and all the things a mom does to run a family. Stewart keeps saying aha aha, I hope he is really listening.... :)
I also am trying to see friends, and stock up for a long winter. I will just say I am modeling after a squirrel..hahahahaha.
I am counting on the bigger kids to keep up with their rooms, packing lunches, helping out dad a little more, and keeping Emma busy. I should be home within 5 days.
Once I start healing then PT will begin. FUN!!
I know there will be something I will forget, but my friends and family will have to take over. My sisters are both coming to be a support. My older sister is coming from VA. I am hoping she will come the night before. We always have a great time talking. She is also a friend!!!
The 3 days before I have to follow a diet to help with the surgery. I am sure I will be very hungry by that morning . I love food so I am hungry just thinking about it.
I am asking everyone to pray for my family, the hands of the surgeons, and me.
Life is short but I want to make sure I have no loose ends before Feb.6th. God is good and has shown our family so many miracles. They go back to when Stewart and I were married just 6 months. He had measles, and the doctor said if he lives we will never have children.(we got 4 miracles:) There are so many I just can't even count them all. I am so thankful for them all though!!!!
The kids have a swim meet 2 days after my surgery. I am not happy that I will be missing it. Daddy will take them and I will have him take the video. They are doing well and I am so proud of their hard work.
I have set up support sites on facebook for the 2 diseases my family have. 1 is the bleeding disorder I have.(1% of people have) CRMO the disease my 1st daughter has.(1 in 1million)
I hope when I am better to be a support to people suffering with these illnesses. I am trying to get people to share so they will not feel alone.
I am getting ready for bed, and will leave more before surgery. I will have my older daughter blog for me while I cannot. She loves to write.
Keep in touch and please ask your friends and families to pray for us.
Thank you
beth
Isaiah 41:10
"Fear not for I am with you, be not dismayed for I am your God! I will strengthen you; YES, I will help you; Yes, I will uphold you with the right hand of my righteousness"

These are 2 old posts.(just learning)2007

September 13 Cameron' s birthday It is early in the morning. By this time 10 years ago I was still waiting for my little boy to be born. He is so big and such a handsome boy. He is excited about his birthday, and his big cousin shares the day with him. Tonight will be homemade chili, and lots of cake!!!! This week Emma started pre K monday. She loves school. Stewart is abroad for work. This is our 1st time all being apart for such a long time.. The kids are really sad.(me too.) I am holding the fort together with my neice. Skye has not been feeling well lately. I am praying she can stay in school. They are so great about helping her out. I will enter more this week. Looking foward to hearing from u all. beth we moved last year. 4:54 AM | Add a comment | August 29 This is a first Hello! I thought this would be a great way to keep up with everyone near and far. This summer I started a management position with a very popular coffee comany. It has been great, exhausting but great.!:) The kids are growing sooooo fast it is unbelievable. Time surely flies by. Cameron is turning 10 this september. He is also in his 8th year of remission from cancer. This summer he went to the survivorship clinic at CHOP. It was wonderful. He is cured!!!Yeah GOD!!!!!!! I must say it has been a long and trying road. I am sure that is why Stewart and I are what we have become. That is believing God has control completly. Our time is not always God's time. It is ok to be discouraged and annoyed, we are human.... Otherwise, Cameron is a handsome boy, with a great sense of humor. He is popular and friendly. He is an athelete, and 100% all boy. I would like to bubble wrap him sometimes,hahaha. Then we have our girl Skye. I call her my middlest. She thinks that is funny...(for now) She will be 9 in October. She is tall and LOVELEY!!!! She is a swimmer, and should be and actress. You would not beleive the drama this girl put forth..hahahaha. This winter she was ill. She has a rare auto immune disorder. It was hard for the Drs. to diagnose. She had surgery on her knee, and had to be in a wheel chair for 3 months, as well as missed school, and be in her bed. She was strong and perservered. It was hard to watch another child of ours to a sickness. It is maintain with daily meds. She does miss alot of school, and has several not so good days. She works hard in school and does well, she is an excellent swimmer! She went to camp this summer with her brother.( Ronald Mcdonald camp) They were gone for a week. We missed them. Emma was home with us, and of course was spoiled more than usual. Skye will be swimming this winter since this is the only sport that is easy on her joints. They start back at school soon. YEAH!!!!!!!!They are happy too. Miss Emma wil be 5 on halloween. She is my little witch, I mean princess.. She will be in pre K. It is hard to believe she is not a baby anymore.. She is fresh and fiesty. I don't know where she gets it from????!!!! She took swimming this summer and loved it. She is ulta social and even more independent. She knows what she wants all the time. She is a clever cookie, and I am sure she will love learning in Pre-K. We as a family are ok. Life has been busy since we are both working full time. My mom has been a huge help. Amy too!!! I will be having my back fixed soon. I am just waiting to see what all my options are. I have been living with this pain for over a year so pain releif is definetly welcomed... Stewart is coaching Camerons soccer team. He is really enjoying his time coaching. Cameron loves having his dad be the coach too.! I will continue to post what is up. Please keep in touch and let us know how you are doing. take care, The Robertson family 11:50 AM | Add a comment | Read comments (2) |

link about CRMO

http://www.steadyhealth.com/articles/Chronic_recurrent_multifocal_osteomyelitis__CRMO__a108_f0.html

A few friends wanted to understand Skye's disease. If you google CRMO you can find the limited info about it.
beth

What a blessing!

Today was a see my long lost friends day. 2 of my very good friends came over with there babies. It was great to hang out, eat, and have excellent conversation! It was also great to have babies in a house that is now far from child proofed. My friend Janet was one of my very dear friends that came over. Her blog, and brother-in-laws blogs are excellent. Their family are a true inspiration of faith, hope, and love!! It is best to go to and read for yourself. I have a link for her brother-in-law in the side bar. You can follow his blog to read hers and the rest of the family. I would challenge you to read and pray.
The kids and I are busy watching a movie on the Disney channel. I didn't go anywhere today, and I am exhausted!! I did make a lovely home cooked meal with mashed potatoes. I have been able to watch several cooking show to better my skills:)
Emma my 5 year old has a 101 fever, and Skye just got her new wheels. (her wheel chair) It is to keep her safer in school.
I am counting down the days till I can feel good as new. Please pray for me on feb.6th, surgery day.
Check out those other blogs!!!

Exhausted by another weekend

The kids had a swim meet this weekend. They both swam Sat., and Sun. Skye started her new meds on Friday. It is a steroid  and can have undesirable side affects. We are praying for none... She did swim a 100 meter back stroke and finished it. I was really amazed by her determination. She did need pain meds when she got home and also took a 2 hour nap.  I couldn't even swim a lap without passing out..hahahaha the thought is hysterical!

Emma and I slept on a chair once we got to the meet for at least an hour. When I woke up I was hoping I didn't drool or snore in public :) Luckily the meet was done by 11am.

At the end of the month Skye will have a bone scan and her meds will be tweeked again.

 I must say Cameron and Skye are growing way too fast for me. I am really enjoying theses little pre teen people. Gosh I love them sooooo much!!!! I love Emma too but we are luckily still at a mommy and wee girl level. I think a bubble for her is needed... I am so thankful and blessed to have each one of them. They add so much to my life. 

I am getting ready for my back surgery, please pray it is approved. I can't wait to not have the level of pain I have had to live with for almost 2 years. I also want to get back to doing some of my hobbies, and traveling would be nice too.

I think I might even try to swim so we can do this as a family. Good exercise too.

 I hope  to keep this blog going while I am out of commission. I love hearing from you. I might even get Skye to do my updates. She loves to write.

I will post updated photos next week.  My computer has been down so I am using the kids.

Did you check out the other blogs???You will be changed forever, I promise!!!!!

please go to..

I have a wonderfully touching blog for you to look at. It is a good friends family. They have been touched by Gods many blessings with a long road ahead. Please join in and pray with us.

www.cfhusband.blogspot.com

follow the links for family members too, you will truly become a cheerleader for them like the thousands of people around the world. Yes, really thousands!!!!

time for change

Today was busy! Skye  has 2 new lesions on her right leg. It is hard for her to walk, and crutches are aiding her. They are on the bone so they swelling on her leg is all we see. Her meds change this weekend. The doctor is confident they will help. (Steroids, and Zantac.) 

I scheduled my back surgery today with the neuro surgeon. If all goes as planned 2 brand new disks.  I am hopeful I will be able to start feeling better fast. I actually look forward to being able to move without looking like I am 70 years old.. The road ahead is long, but God has shown us so many healings I am trusting again. 

On a lighter note the kids have a swim meet this weekend. I am not sure if Skye will be up to it, but Cameron is ready. I think something about a puppy when I am better is motivating him....

I guess since we won't be bringing any babies home, a puppy will be the change our house needs... we will see.

Please pray for Skye. The reactions to the drugs will be limited. She will be strong physically during this flare. 

Please pray for our family. The time I am in hospital will pass quickly, and I will recover quickly too.

Time to get on with it. Stiff upper lip and all that entails...

Day at Dupont

Today Skye and I spent the day at Dupont Children's Hospital in Delaware. Skye has not been feeling well. She has a rare childhood auto immune disease that wants to come out and play. If all goes well she will grow out of it by the time she is 18. Long wait... hahaha! We spent the day waiting , blood work, waiting, x-rays, and waiting.. then cafeteria lunch. (yummy)

We will get the results tomorrow. She is also scheduled for a bone scan at the end of the month. Back to her CRMO.(chronic recurring multifocal ostiomylytis) It basically causes lesions to develop on the growth plate, and can be trouble if it is injured. She has been taking an anti inflammatory med since her 1st big flare last winter. It is ok but I guess not strong enough. The next step is steroids, and methotrexate(yes a chemo). This will have its own side affects. I am encouraged by the doctor. I know Skye is in the best hands of all.....our GOD!!! She will be taking a rest from school but swimming as much as she can handle. This is so atrophy does not set in. 

   (back track) Skye has had joint issues for several years but I was told it was growing pains. I guess I just know my kids, and kept pushing till I found a doctor that was wiling to take labs on her. It is a hard disease to diagnose and also rare, so you do the math.  I always believe that a mom needs to trust her instincts, they are usually right. Sometimes a mom has to be the forceful, pushy lady in order to get what is best for her young...Like the animals...hahaha!!!!!

      I think the talk of the new meds make her a little scared but she is a brave girl. I have to say my kids day in and day out are my heros in many ways. They have the child like faith the bible talks about, and it reminds me of the wonderful gift they are to me!!!

I guess in my house the bumps in the road are more frequent, but our cries for help are always heard.

I will update the test results when we get them.

I will also be scheduling my back surgery this week. My goal now is to just get everyone healthy and ready for mommy to be out of commission for a while. I will be checking my facebook, and my blog.

Have a happy and healthy new year!!!!