Sunday, February 7, 2010

A long week

I am not sure where the week went and now the weekend is almost over with too!

We have all had colds for about 3 weeks. Just passing it around the family. Poor Zak always gets it the worst with terrible sinus infections. His immune system is horrible and it just takes him longer to get through it.. I definitely think he got that from me. I think we are almost completely over it all! Thank god!
Last weekend we spent a whole day cleaning and rearranging Zak's room! Going through medical supplies we kept "just in case". Thankfully the just in case never came for some of them. Also, we took down the Mickey stickers and up went Cars! I love it. Something new and I did not even need to paint.

Tuesday was a day spent at the clinic. We both hate the all day appointments. 7:45-5:30. What a LONG day. Both kids had appointments with PT, OT and Speech/Feeding for evaluations to see how they are doing and if they need any new equipment. Of course we were told how adjustments need to be made to his wheelchair, but they cannot touch it since we did not get it from them. We hear that all the time. Why would we get Zak's wheel chair from a clinic when we can go to MN to Shriners and that is what they specialize in. Not to mention if insurance denies anything they make sure we never have a bill. After the 1 year of fighting to explain why Zak needed his walker and being told time and time again by insurance he did not need it to walk I only wish we would have went to MN and been done with it. Then I would have not had to fight the battle for so long Also Shriners is so positive and always see the good things. They really helped us adjust to a wheelchair and accept it.
Ok, so after the therapy appointments we had the Neurology appointment where I asked several times about us seeing the doctor in Madison and every time the subject was ignored or changed. Seriously. So we never got any where on that issue. Then it was off to Genetics. The annual 1 hour session. So we are suppose to go to these appointments to make sure we are covering all the medical needs and if they happen to know of anything else we need to be checking into. I follow my yahoo groups, support groups and talk a lot to people. So We are typically doing all the talking and they do the listening. The comment was made that our over 50% of the population with there abnormality is sitting in this room. Well to be exact they are 100%. That is when it finally hit us.. is it really necesary to go? By all means I am all about sharing and helping the next person. If what we know can help another person I will share what I can. But exactly why should we be paying for the appointment? So off the x-ray for Zak where we learned he has Congenital Radial Dislocation of his left elbow. Meaning it dislocates and there is nothing the doctors can do about it. So no grabbing his hand to lift for any reason. Lastly it was GI for both kids. We love Dr. Park. He is the best doctor we have ever met. Absolutely amazing. I love these appointments. He was very happy with Zak. No changes and he always reminds us how far Zak has come and how worried he was about Zak when we first met. Zak really was a very sick little boy. Every time he reminds us I get teary. I never knew he was that sick - I just did not see it. All I saw was the cutest little boy. Then Callie was Next. He was also very happy with her. 2 good reports! She did get her Mickey button (g-tube) changed to a bigger size. She is much happier now. Now we can do the changes at home since she has the right size. Callie is now up to 11lb 5oz and 23 inches long. Zak was up to 31lb 8 oz and 40 inches!! Way to go kids..
After our appointments Chris left to go to Iowa for 2 nights on business. Thankfully the kids were doing good and the nights were not bad. This weekend I was able to spend Saturday morning with one of my good friends. We went Dress shopping for Chris's sisters wedding this summer and out for coffee and girl talk. She really is an amazing person on a mission. The rest of the weekend was spent cleaning some more. Lots of Clorox wipes trying to get rid of all the germs and get ready for Callie's birthday party. Yes she will be 1 on the 11th! Our baby girl is growing up. What a journey this year has been.

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Pics from the week. Aren't they just the cutest kids!

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