Thursday, February 17, 2011

Singing In Her Bathing Suit!

So I was encouraging Miss Addy Bobwah, thats what we've been calling her lately! Not sure who started it our why it stuck. We all love the Disney movie Aladdin so, whatever! Anyways I was encouraging her to tidy up her toys, and she started singing this song from church while cleaning! So cute so I asked her if I could video tape her.....she usually stops all cuteness when I pull it out and stares at the camera, so much to my amazement she performed!

Nah Nah Nah Nah Nah hidey hidey hey God loves you in a very special way!

Messy hair, bathing suit while its -30, lunch on her face straight from Northern Alberta Canada the cutest Addison we know :)

-30 is swimsuit season?

Apparently at our house -30 is swimsuit season! For the last two hours my girls have been wearing their swimsuits and "riding" water slides!!! Also floating down a lazy river, and as I speak they are eating lunch in the "cabana" in their swimsuits :) I would take a picture however I would be horrified if anyone saw my mountains of unfolded laundry and dust bunnies that are taking up residence in my sitting/dinning room! Somehow the house work has become more than this Mama can keep up to! Yet here I am blogging about it and not just getting down to work! I guess I am hoping a cleaning fairy will magically appear! On brighter note the love of my life and probably my most favourite person in the whole wide world is coming home is 3 more sleeps :) In case you were wondering.....I am talking about my husband!


I just have to say we are all doing really well. Through this silly little blog I have met some amazing people! Two of which have experience in what Addison is going through. I am so thankful for their wisdom and encouragement. I have learned so much in the last couple of days and feel like we have some control over the decisions that will be made by Addison's specialist....maybe not control but information that will help with making the decisions that lay ahead of us. I have been encouraged by the fact the treatments side effects may not be as awful as our doctor and pharmacist has suggested. Yay! We will encourage the specialist to do a liver biopsy before starting treatment, and hopefully take our time in making this educated decision. I feel as if a huge weight has been lifted from our shoulders and look forward to meeting with this physician and learning more about what is to happen. So thank you to both of these ladies! One of which I spent 2 hours on the phone with today! Its amazing what a little blog and some kind people who read it can do! Its funny because I thought we had 12 or 13 people read it and my family, and I was really just keeping this up for my family so they could see pictures and funny stories about what was going on up here. Yet through it I was able to glean some amazing support and information for Addison and her treatment!


All I can say is I am thankful oh so thankful for "normal." Our normal anyways :) I think next week all I will be thinking is gee I am so glad I am doing..... instead of being in the hospital with Addison :)

Monday, February 14, 2011

Happy Valentine's Day & a Change of Plans.


Happy Valentine's Day!




Riley, Josh & Nate were excited to go to school and take part in the festivities.....espically Riley since this is the first year at school. Today was Nathan's first day back since breaking his leg, so hopefully he will continue feeling less pain and able to attend the rest of the week! 2.5 weeks home was a long time!




Addison had another appointment with her Pediatrician today. I had been doing alot of reading about the treatment she was starting, and it contradicted what her doctor was telling us.....so needless to say I was a little concerned about his course of action! What we have decided on is that we will see a pediatric GI doctor in Edmonton before we start treatment (if we start treatment.). Addy's pediatrician said he would be more comfortable with that since this was all new to him, and well this Mama feels alot better about that. I hate putting off this treatment, espically if it should be started right away, however I don't see why they would rush something like this espically with the side effects that are involved, when the doctor isn't really sure if its the best course of action. I feel like we have been on a roller coaster ride this last week, with all that has gone on! There is a possibilty of the specialist just holding off on this medication and watching Addison. I like the sound of that! We will be bringing her for monthly blood test to watch her Liver enzymes etc. so they can see how things are changing. Something little miss was quite miffed at me about! She howled the moment we pulled up in front of the lab today!!! Poor little squirt.






So now I guess we wait and pray, we wait to hear from the specialist about an appointment, we pray that maybe he will decide to hold off on the treatment, that there really isn't that much damage done to her liver right now or in the next 4-6 weeks while we wait for an appointment. Lets be real, what I am really praying for is that her Pediatrician at home here is WRONG!!!! And my sweet baby girl won't need this at all! That is what I am really hoping for! I can't help but feel frustrated with this doctor.....he kinda sent us into a tailspin! Why didn't he say that we needed to see a specialist and that there was a possibilty that we should start this treatment? Why did he book her in right away? Didn't he know how scary this would all be? Well I guess not! And I really shouldn't complain! He was doing what he believed was the right thing, at that time.






Thank you, thank you, thank you for your care, concern and prayer for Addison. It is amazing to see how many people love and want good things for my girl! I have to say this last week I have been thankful for the mundane.....like cooking, cleaning and doing laundry for my family! All of which you can not do from a hospital :) I am now thankful that our family only has one week in a hospital we love in Montreal not two weeks of hospital stays on our calendar right now. I am thankful for the wait! Weird I never thought I would ever say that! I will of course keep updating you all on what is going on with this once we know.

Thursday, February 10, 2011

The Button


I have to say I am beyond overwhelmed and amazed by the encouragement and prayers our family has received from our dear friends we know, blog friends and strangers! The words of encouragement have brought me to tears as a read them. Good tears! Tears of encouragement, so thank you from the bottom of our hearts. We may not always hear Gods voice audibly or even through his word, but I have certainly heard him through your messages.



It has been difficult having Howard away at this time, not having him here to lead us and make decisions. But I have to say when I get to talk to him in the evening he is certainly a rock and a man of great faith, even if he says it only a few words. He reminded me that we have been through harder things than this and God has always seen us through! And its true God created it all the heavens and the earth, all of us on earth! He can more than carry us through! He is our provider, comforter, healer and deliverer! When I remember that, it comforts me to know the kids and I are not alone right now :) On a lighter note Howard will be coming home the night before Addy is to be admitted! Thank you God! Also we have found an insurance provider to carry Nathan and Addison's medical needs! A huge relief for our family! The only reason we are in between carriers is because we have started a company in January.



The only part of me being so open and honest about this situation we are in, is that I don't want this to discourage those people that may be considering adoption and more importantly the waiting child program. I had someone ask that if I knew then (upon referral) what I know today about Addison would we have not accepted her referral......ABSOLUTELY NOT!!!! I have no doubt in my mind that she was meant to be in our family, she is our daughter and I love beyond what I could ever imagine! God started us down the adoption trail because we were moved by the thought of a child with brittle bone disease not getting the love and care they need.....and that was what we needed to keep taking each step towards the unknown. What God brought into our lives was the most precious, funny, joyful, loving and compassionate little girl with a minor need that turned into something greater. And I am so beyond grateful that God knows better than us!


Ok now that I have rambled! More about the button! My sweet friend Paige created a pray for Addison button for us! I have never met Paige in "real life" but through blogging I have gotten to know her and love her! your can check her blog here http://www.theriegelfamily.blogspot.com/ and see what she posted about the button. Thank you Paige! Hopefully we get to meet for real :) Anyways you can add the button to your blog if you like by grabbing the codes and adding a tool.


Also a family we travelled with, who is a Pastor of a church in Calgary is encouraging his congregation and others to pray for Addison this Sunday, as a national prayer for Addison day! So beyond humbled and amazed by such love from others! Thank you to everyone else that I can't even begin to mention, for you love and prayers.


Finally Miss Addison is doing well, we see no signs of sickness, and we will be seeing her Pediatrician again next week armed with many questions! Ideally Howard and I would like to speak to a specialist before going ahead with this treatment. We will see what happens! She is beginning to hate going to the doctors, and I can't blame her! Everytime we hop in the van she tells me "no needles! No doctors!" So I have to reassure her that no we are just going to the grocery store etc. She is so sweet :) We love her so much! Nathan, Josh and Riley are of course worried and wanting to pray for Addison's liver every night, I keep trying to reassure them that it will all be ok.


The lord is my Shepard, I lack nothing. He makes me lie down in green pastures, he leads me beside quiet waters, he refreshes my soul. He guides me along the right paths for his name's sake. Even though I walk through the darkest valley, I will fear no evil, for you are with me, your rod and staff; They comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil. My cup overflows. Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever.

~Psalm 23~

Wednesday, February 9, 2011

Flying to China? And other stuff :)




I had to share this quickly, I know the pictures aren't great and both the girls are in their PJ's with bedhead! But whatever!




They were coming home from China with their new babies! Addison started this pretend play, and Riley followed along :) Riley even made a makeshift baby sling with two of her scarfs! It so fun to listen in on their games :)
On another note, Howard was able to have Addison added to our extended medical with no questions asked! Thank you God!!!! And he will be coming home for the week Addy is in the hospital! Which is a huge relief because I didn't want to rely on friends to look after the kids for that week, as we also have to go to Montreal from March 6 - 10th for Nathan's treatment and specialist appointments. And may need their help then! Things are falling into place. (insert sigh of relief) Our family certainly doesn't want to be partaking in this new journey, however this is the path God has chosen for us to travel, so we will do so with trust in him and him alone :) And try to remember that when we are in the really tough parts :)

Tuesday, February 8, 2011

Questions upon Questions

We have had a few questions as to why the medication will not be covered, well mostly politics! Addison was in the process of being added to our extended medical, however because we have started our own company, we only have 3 months of coverage left. I have been looking into other extended medical plans, but all of them have health questionnaires and will deny coverage for any existing conditions our prescriptions. Our best hope is if she can be admitted as an outpatient and the hospital covers the cost. I have talked to our GP and he said will have to push for that as she needs these injections. I must add though, we have had problems with that exact idea in the past with Nathan and his infusion, hence the reason we go to Montreal for treatment, not Edmonton or Calgary. The medication will be covered for sure, for the first week she will be admitted.

I guess what I know is, that God will provide our every need (not our every greed!) and as much as I trust he will provide, it still scares the heck out of me :) I guess that is me trying to take these problems and fix them on my own! Heh! I should probably stop doing that! Lol!

We have been told by both of our doctors that this is a condition that they have never dealt with, however they are consulting specialist's for instruction. So I guess we are the blind being led by the blind right now :) Right now I have more questions then they have answers for! I hope to have more conclusive information before we start Addison on this treatment.

I have to thank you all for the messages of encouragement on the blog, facebook, email and telephone! It means alot to us. It always humbles and amazes me, how everyday people can show Gods love through their hands!

Monday, February 7, 2011

Unexpected News From the Doctor.






As I sit here and contemplate how I am going to write this post, I am looking for pictures to add and chuckling at all the comical faces my sweet girls can make.



Addison and I have returned home from our last doctors appointment, a little stunned and overwhelmed. We have just had word that her body is attacking her poor little liver.....which means in two weeks from now Addison will be admitted to the hospital to start 4 - 6 months worth of anti viral injections. She will need to stay in the hospital for the first week of injections to make sure she has no major adverse reactions to the medication. And then we will be able to do the injections as out patients (hopefully) and come home.



Our pharmacist has warned us this medication can cause hair loss, nausea, lack of appetite, lowered immune system, aggressive behaviour, and extreme exhaustion, during the beginning of the treatment, however (hopefully) her symptoms will improve as the treatment progresses. We have been warned that the treatment is extremely expensive, so we are praying she can receive treatment as an out patient so that the injections are covered. I know the Lord will provide a way for us to cover these treatments, yet to say its not a concern, would be an understatement!



Addison's pediatrician has told us that if we can't get control of this she could be looking at a liver transplant in the next couple years! That gave me a bit of a jolt, and I am not sure if I heard what he said after that, for a few minutes!



To say that I am shocked is an understatement! It was on our radar as an off chance that this could be an issue ( like 5% chance) from the tests the orphanage was testing her for. As I sit and type this I have moments of peace and trust that the Lord will carry Addison and our family through this, and then moments of such sorrow and anxiety.



Howard is still away working right now.....we have seen him for one day in the last 2o days. Our whole family misses him immensely! We are hoping that he will take leave and come home for that week Miss Addy is in hospital, so one of us can be with our other kids, however if the injection is not covered, he will remain away so we can swing it. Also Nathan broke his femur 10 days ago and hasn't been able to go to school since it has happened. So to say that I feel like we are going through a time of testing, would be a huge understatement!



In amongst this gloomy post, I must say....Our God is good, ALL THE TIME! He will hold us together and carry our family through this trial. I know beyond a shadow of a doubt that these trials and momentary struggles we must endure here on earth are preparing for us an eternal glory that far outweighs anything we can face on this earth! Am I weary? YES! Am I troubled? YES! but I know that God says that He uses ALL things for the good of those who loves him! And I can do all things through Christ who strengthens me!



You word is a lamp unto my feet and a light unto my path. ~ Psalms 119:105




The Lord is a good refuge in times of trouble. He cares for those who trust in him. ~Nahum1:7~




When you pass through the waters, I Will be with you; and when you pass through the rivers they will not sweep over you. When you walk through the fires you will not be burned; the flames will not set you ablaze. For I am the Lord, your God. ~Isaiah 43:1-3




Well my family, friends and bloggy friends if you believe in the power of prayer, our family would be humbled if you would lift our sweet Addison up in prayer. We are praying that this medication will heal her, that she will be 100% after this. That she will not succumb to the side effects of this medication and that she will be able to trust Howard and I as we guide, love and nurse her through this illness. Please pray for the rest of our family as well ( I think we may need it! lol!) Our other three kids will be quite concerned and I know this will be a trying time for them as well. I am hoping to have our laptop running at the hospital and will update you all, as we know things. We would like to make her stay as fun as possible. As we are only there in case she has a bad reaction, so if any of you have any ideas for entertaining a 2 year old who doesn't like t.v. Please, please, please message me in the next two weeks so we can prepare a hospital entertainment kit :)
 

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