So we had a couple of crazy days here at the Smith Family Home. One of them was me slamming my hand in between the Door and Door Jam so I did not feel up to typing until today again :)
Well those of you that are friends with my husband on FB know now that he had you all worried more then normal when you read his post yesterday. I for one did not know about the post until I received e-mails and phone messages all morning. I was a bit confused (hence I can excuse myself on my blond hair) and I was unable to answer anything due to Connor's schedule being packed with Therapy.
So by now most of you know we DO NOT have to sell our house asap and move right away to pay for medical bills. It was an April Fools Joke .....
We did however get a letter from The Children's Hospital that showed us the bill they send to United Health Care and it is after 'only' $197,803.77 for a 31 day stay. Wonder when we will see the one from Children's Memorial in Chicago ....
You know by now that I will be on everyone's case in December about being wise when renewing your insurance and reviewing the plan you have in place for your family. I will be the one that will push you to pay for the best plan you can possibly afford! It is such a cliche saying this but so so true .... 'if it can happen to us it can so easily happen to you' ... life can change in a heartbeat and I would rather be safe on other things then cutting down on the premium for insurance! So you will have my voice in your ears when the end of the year is near :)
On the Home Front it seems Connor has an internal clock and it is not working in our favor when it comes to us trying to sleep in. This morning at 7 AM sharp there was his little voice saying 'we need to get up because I need my 7 AM meds' ... oh how can I explain how responsible my 5 year old had become? he reminds us in time for each of his medication schedules, at 7 AM, at 8 AM, at 9 AM, then again at 7 PM and 8 PM.
Today was Connor's Solumedrol and Methrotrexate infusion again and everything went wonderful! Sharon, Connors nurse has been precious and we are very happy at this point how attentive Prospect In Home Care has turned out to be. What a huge relieve this is considering what the first week felt like. I think it proves how frayed all of our nerves were and how everyone had to learn how to work together and how things can change when everyone is willing to make an effort.
Tonight we all ventured out for Dinner, since it is 'Good Friday' and even thought we are not Catholic we still have the tradition to eat fish. We found a place in Woodland Park that had a 'Fish Fry' and it was a lot of fun. Connor really begged to go and he tried so hard to hold on but of course tired quickly so we did not have a long leisurely dinner but a fun one :)
I am keeping my best news for last once again and this would be the phone call we got from Dr. Soep. Connor's blood levels are looking great, with a CBK even below 'normal' at 27!!!! This is wonderful news as we are now tapering back next week from two Solumedrol infusions to just one!!! Connor is scheduled to go to TCH next Thursday at 8:30 AM now to get his second dose of IVIG, plus his one infusion of Solumedrol and Methrotrexate. We are so thrilled about this and we felt every reason to celebrate tonight for one huge step in the right direction :)
Connor also has a new date set for his check-up to see Dr. Curran at CMH in Chicago. It is now on April 21st at 4 PM. Ron will be back to flying by then so the plan for now is me taking Connor while my Parents stay home watching Alexander.
Another happily repeated 'Thank You' to our lovely friends the Morgan's! I get weekly letters from Rev. Morgan that are always so uplifting and encouraging. I so cherish those letters and will always keep them close at hand.
As you all know by now my mind can change from one moment to the next and as I had planned so well to skip Easter this year and just focus on a quiet Birthday for our boys here at home this of course was not to be :) This morning we set our eyes on painting some eggs, then I decided to ask my patient husband to go to the attic and get all our Easter decorations out, followed by our lovely nurse Sharon who shows up with a Birthday Bag for Connor & Alexander that included Easter crafts and more eggs to paint ... THANK YOU Sharon for being so thoughtful! the boys loved it and we now have 30 + eggs painted!!!
Now my house is decked out in partly Christmas decorations, some Easter and by Saturday night hopefully Birthday Balloons.
Once again what a difference a year makes. Last year we had a Party at the Zoo and now we are just laying low at home and really loving it. The Boys easily agreed to have a fun party for everyone this summer so it is not forgotten just pushed back :)
Wishing You all a peaceful weekend.
Love,
R A C A
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