My sister and her husband left for home on the 10th of October and it was a very sad day for me. I said it so many times already but it is true when I write that their visits are always a true delight for us. We love all our visitors and each one has a unique quality about them and what we love about Beate and Rainer is the part about their independence, willingness to fit right into our daily life's and and be part of our home and of course the fact how much we enjoy to be in their company. Every night they were here we ended with Rainer starting a fire outdoors and the four of us sitting around it talking. Since the boys go to bed at 8 PM it was a fun and relaxing way to end the day and at one time we sat until 2 AM! A very rare occurrence for me if you know me well. I am the true supporter of needing 12 hours of sleep (not sure this has happened to me since we had the boys) to being able to accept 10 hours but knowing that anything less then 8 hours is painful and should not be allowed. Anyone that knows and loves me knows that it is very questionable to be around me when I get less then 8 hours of sleep and that you never know how my brain might react when it’s main intend is telling me all day that it needs sleep and rest asap. Now putting this aside I was astounded that I did so well when they were here and my sleep pattern was not from 10 PM to 7 AM which is about the norm :)
Connor has been doing fairly well in regards to the JDM and he has been very busy with Therapies. I can not believe I am now not sure if my last blog entry was before, during or after his last IVIG Infusion. This was #8 and we are set up for one more on September 30 and then Dr. Soep will decide how many more we will schedule and how far apart. We stayed on every 4 weeks before so we might possible space it out to every 6 weeks. There is only one complain from Connor and that is the part about his legs hurting more. The blood levels do look decent so the only option mentioned before might be the therapy is getting harder. Connor’s moods are still on the up and down but he still has moments of being very depressed and sad but he tries very hard to ‘act’ happier. I am saying ‘act’ because I am not sure if he really is feeling better of just trying to seem better.... so I keep watching him closely.
School at home is still busy and I am lucky to get such great feedback from friends like Kim and also from the boys last year Cottage School Teacher Mrs. Strubel. It helps so much to have someone to talk to that has experience and gives such great advice. My lovely husband also talked to me about different approaches to take and I think we are making progress. It is however still a challenge to get the amount of school time in when we are on the move so much in regards to twice a week therapy and every 4 weeks the added day in the hospital. For one we spend a lot of time in the car and just for the Hippo Therapy, which Connor LOVES, we are gone from home for 4 hours for a 45 min session. I also thought that we would be able to get a lot done while we are at the hospital for IVIG but then how do you push a child when he is hooked up and being poked and wants to rather do arts and craft and watch movies. I know I can’t blame my boys!
On Therapy days we spend 3 hours at the Center and about 2 1/2 hours driving. Connor of course is busy with therapy so I try to work with Alexander in a busy and very small waiting room.
So my question this time is how do all you parents keep up with a normal school schedule when your child misses days of school all the time due to JDM?
Now if you are one of my many FB friends you also know already about my little household disaster of a dying Dryer last week. Well, it really did not die but the Lint Filter Sensor quit and that means after doing research all morning that it would be very work intensive to have it replaced. To reach that area you have to take the Dryer completely apart. The biggest upset for me in the part of trying to find someone that would do this kind of work was for one all the Home Appliance Repair people listed in the yellow pages seem not to answer or return calls and when I finally reached someone in C-Springs I was told that 'yes' they work on Bosch Dryers but that we are to far out and they only travel as far as Woodland Park! So now I have a perfectly good Dryer that is a good name brand and 'only' 7 years old sitting in our garage because I can't find someone that would repair it in a way that made it cost effective. We are now, 'Thanks' to my Husband and Brother In-Law, the owners of a new dryer that has a 5 year warranty for labor and parts and it was set up and running the same day my other one quit on me. Now is it ironic that I can replace one fairly easily but not get one repaired????? To my Bosch Dryer all I can say is the Craigs List is waiting for you and maybe someone is willing to pick you up and take on the challenge to get you repaired in C-Springs :)
The sad part of course is that we really can not afford right now for any of our appliances to quit on us. We have been juggling a somewhat broken Ice Maker, a Dishwasher that is not drying and a compacter that stopped working. Now all of this is workable for me but a Washing Machine and a Dryer are items that our household can NOT live without. So painful it was but then we know life is not always your friend ....
As to end my writing about our trip to Alaska, it truly was wonderful to see Niki and spend time with Harlow as well. The time there was a sweet and short 24 hours so not really long enough but better then not at all. We also got to see Celeste whose company at the Museum and for Dinner was so precious for me and I have to Thank her again for giving me that great 'Girl Time' and seeing the boys and me not always at our best but still keeping up with us :)
Connor and Alexander really did well on the flights and most of the time there in Alaska but they had a few meltdowns as well by being tired and over stimulated and of course Celeste had the pleasure to see some of this unfold ....
It is ironic in a way how I started this blog to document our journey through JDM and now I am just mentioning it a little here and there. Connor is still in Hippo Therapy and loving it and he still gets his weekly Methrotrexate Injections in his belly. I am a bit worried about his complains lately about his legs and him walking more on his tip toes again but I am also at a stage were I so want a break from JDM and ignore it as much as possible. It comes from having a feel of our past life again, from how we were before JDM hit us and I missed and miss it so much! It has been so beautiful in every way to be back on an airplane and just go and not worry about anything but us as a family being out and about and having fun. Even our trip by car with Beate and Rainer when we went to the Sand Dunes or when we went on the ATV's for the day here in Woodland Park.
I am like a child in some way right now that when I just ignore it I can hope it will all go away. If we did not have the daily medications and the weekly therapies I truly could forget about all of it. I so love all our JDM friends and I love the support I found but sometimes those last couple of weeks I want to not read or hear about the struggles that we are all facing because it keeps drawing me in when all I want is turn my back on it...
Sounding crazy enough for you? I am really at a cross road here .....
So if you have asked me lately about my blog up-date, here it is :) This should have given you enough to read for two days - haha, and I am glad I am all caught up :)
Love to all of you that have been with us step by step in our crazy life.
To Family and Friends!
Hugs,
R A C A
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