Good Morning. This past week has been somewhat of a trial, so I apologize for the lack of updates. Monday started with a swallow study at Children's. They found that Alex is doing a good job of protecting his airways but food is sitting on top of his esophogial sphincter and accumulating and getting very close to his airways. This causes a violent cough at times and a lot of discomfort for Alex. If it were you and I, we would feel like something was stuck in our throats. Alex does not get that sensation. I really don't know what to do with the information. They asked that Alex learn to dry swallow; which he has. Unfortunately, it does not seem to have made much of a difference.
During the swallow study, the nutrionist made the point that Alex is not getting good nutrition on his current diet of waffles, pasta and root beer. So upon her recommendation, we have added a "complete" vitamin to his morning and I am trying everything to get him to drink his vanilla milk (instant breakfast). So far he has not finished one glass. Oh well, he is eating his rainbow meals, and we won't give up on this one just yet.
WARNING!!! THE FOLLOWING PARAGRAPH MAY CONTAIN TOO MUCH INFORMATION, READ AT YOUR OWN RISK!!!
Tuesday, I saw my therapist for the second time. She has asked me to write down "what would happen if I were to accept myself". Accept myself? What does that even mean? Do I accept that I am out of shape, overweight and a control freak? Do I give up on my dreams to be fit, active and more carefree? This assignment has put me in a complete funk all week. It would be so much easier to accept myself if I were the person I want to be, instead of what I am. Does that make sense? Do you ever feel like that or is it just me? Okay, so now you have a glimpse into my dysfunctional self. Please don't use it against me! Let's move on, shall we?
Just to add more stress to the situation, I am extremely anxious about Thursday's MRI. What if the chemo is not working, what does that mean? Oh dear God, please let there be good news Thursday. This feels like the two weeks before we had the first MRI, when Steve and I just had to wait and pray and cry. I'm actually crying now. I really am so very frightened.
So all of this stress and late bedtimes has resulted in loud voices in our house. I hate loud voices and next week while Steve is traveling, I will do everything in my power to get the kids to bed by 7:30p.
Okay, how about some good news? I have to give a shout out to Eric, Courtney, Tina and Kathy. Each one of these lovely people has offered help with the kids that has/will make life so much easier. Also, thank you all for the comments. I really rely on them to keep me going.
Alex reached his goal of 33 checks on this week's responsibility chart by Friday, so we went to the movies! We saw "Everyone's Hero". It was a good movie and I would recommend it. Christopher Reeve directed it and it has a good message. Alex also got his goody bag three times this week. He only had to get checks for "eating a rainbow meal" and "drinking a milk". That is three more than each of the last two weeks. So that is huge in my book!
Lastly, after much consideration, Steve and I have decided to take Alex out of his afterschool program. Currently he goes to school from 9 to noon, then on Monday, Wednesday and Fridays stays till 3:45p. This has created a lot of confusion and not allowed for much structure for Alex to get used to. In addition, he is not always there for 3 afternoons a week due to his many appointments. So instead of spending the money and creating less structure, Alex will attend school in the mornings only. Wish me luck!!
Hope everyone is enjoying autumn, it is lovely here in Denver. God Bless, Kiss a baby for me!
TTFN, G
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5 comments:
Hi again, Gwen. I'm so grateful that you're taking the time and the painful honesty of sharing Alex's story (as well as Steve's, Zoe's and your own)during these extraordinarily challenging times. Your entire family (especially Alex) will ALL be only the more able to lean on you, as the result of your therapy. Having undergone this experience myself, I can tell you that therapy heals the most unbelieveably deep and complex wounds by thoroughly cleaning them out first, and then allowing them to 'air' and heal from the bottom out. It hurts a lot and you do/will cry - but you'll be better faster and more completely than by any other treatment. AND you'll have the empowering experience of visualizing yourself as the strong, loving, honest, lovely and funny woman that the rest of us see, hear and 'read'. I genuinely wish that I lived nearer to you and could translate my Mom noises into personally helpful action but, absent that, please feel my hugs, my prayers and my unbridled optimism...
Gwen..I don't pretend to know you or know what you are going through. Accepting yourself is the hardest task in the world to do, couple that with your current situation it can seem to be an impossible task. However, it doesn't mean that you give up on the person you aspire to be, it means you realize you are who you are and gives you a starting point to start towards your goal. Although we have never met, from what I read on this site you are a WONDERFUL person. Through my journey of life I have found that I am my own worst critic, which seems to be the case here as well. Keep up what you are doing, you are doing a GREAT job. Sending my thoughts to you and your family, and will send my prayers for this Thursday to come quickly with nothing but GREAT news!!!
Gwendolyn,
When I look at you, I see a woman of incredible emotional strength who is extremely well-grounded. I see a woman who is adored by her children, and who would do whatever is necessary for their well-being. I see a beautiful woman who is so much more than a number on a scale. As you know, I am a large-sized woman, and all that I can say, is that when you are ready, you will lose any amount of weight that you want to lose, and you will work out whenever you want.
My thoughts and my prayers are with you and your family, especially this Thursday. I know from your blog what an important day it is for all of you. I, too, am sending tons of positive thoughts your way.
With lots of hugs and admiration,
Teresa
Gwen, if there is anything I can do to help, in terms of just someone to talk to or watch the kids or whatever, please feel free to call. The offer is genuine.
Susan A.
We are all sending positive, healthy thoughts Alex's way for his MRI. Here's to good news on Thursday!
~The Tunheim Family (Annie, Sam, Jackson, and Alex) from MAC
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