Frustration!

I have been trying to decide how personal I want to make some of these blog entries. There are a lot of things on my mind lately and I struggle with whether or not I want to share or just keep things to myself. This is one of those entries that I have been debating on whether or not to share...

In addition to the tooth trouble I have had lately (see previous blog), I have had several other frustrations that I have been dealing with that all seemed to culminate at the end of last week:

- DH has been working long hours this past week since he is now at the vault upgrading their computers and testing the system. On Tuesday & Wednesday he arrived home at about 7:30, to which I was pleasantly surprised. Thursday evening I had a YW training meeting organized by the stake that I was supposed to attend. I had told DH about it and said that if he thought he would be working really late that I could get a babysitter to watch the kids. Well, I didn't hear from him all day so I assumed that things were going well and I would see him around 7 or 7:30 again. When he wasn't home in time for my meeting at 7, I loaded the kids up in the car and left him a note telling him to pick the kids up at the stake center. Our meeting was in the cultural hall of all places (not a very good place to try and keep kids quiet). I sat off to the side with my 4 kids trying to keep them quiet with some coloring pages I had printed out. I told my YW president that I expected my husband to be there any minute. Luke kept asking when Dad was going to get there so they could go home. An hour goes by and still no DH. The kids were terribly restless. The meeting finally ended at 8:30. I was not too happy, to say the least. I took the kids home, got them in their pajamas and off to bed and then DH finally came home after 9:00. If I had known that he was going to be gone that whole time I would have gotten a babysitter to watch the kids. I had even asked a girl the night before if she would be available to babysit if I needed it. I think my husband learned his lesson though because on Friday he actually called me a couple of times from the vault to let me know how things were going and when he expected to be leaving for home...

- We would like to have more kids and I would love to be pregnant right now, but there is some genetic testing that I would like to have done before that happens. My sister has a son who has Muscular Dystrophy and my sister was tested and found to be a carrier for the disease. It is an X-linked recessive gene which means that since my sister is a carrier, I could also be a carrier. We were all surprised when my sister was diagnosed as a carrier because we have no family history of it. We all thought that her son was where the genetic mutation began, but apparently not. With an X-linked disease if the mother is a carrier, there is a 50/50 chance that a son would have the disease and a 50/50 chance that a daughter would be a carrier. (My sister has 4 kids - 2 boys and 2 girls - and she has all four of the possibilities you can get.) There is not a huge chance that I am a carrier since there is no family history of it and I have 3 brothers - all of whom don't have MD - so the mutation either started with my sister or a very slight chance it started with my mom. I have thought about it a lot and I just can't bring myself to have another child yet, knowing that there is even a slight chance that I might be a carrier. I don't know if I could ever forgive myself if I ended up having a son who had MD because I didn't get myself tested. The life expectancy for the type of MD that my nephew has is the early 20s, with a wheelchair usually required by age 12...

The frustrating part is that I have been trying for the last couple of months to find out how to go about being tested for MD. I have talked to an OB/GYN (who didn't even know that it was an X-linked recessive gene) and I have emailed and tried calling various groups that work in genetics. My children's pediatrician gave me a phone number for the genetics lab at the University of Utah and they don't know anything about MD and gave me another phone number to call. Every phone number I have been given, the people at the office don't know anything about MD and pass me on to another number. Last week I called my family doctor and set up an appointment hoping that they could at least draw some blood and send it to the lab that my sister's blood work was done at. Well, I basically paid a $15 co-pay for nothing. The doctor couldn't find any lab order numbers for testing for MD, so he couldn't even order the test. He gave me another number to call at the U of U and once again it was another dead end. One phone number that I was given by the U of U is supposedly for the MDA clinic in Utah and every time I call the number I get a busy signal.

So on Friday after my appointment I tried finding more information on the lab where my sister's blood work was done and I found an email address for them. So I sent off an email explaining my situation and asked if they could give me a lab order code so that my doctor can order the lab and get some blood drawn and sent to their lab. Hopefully I will get a reply in the next day or two. If not, I will try calling the lab (it's located in Texas - my sister lives in New Jersey). I just would really like to get this testing done so that we can then move forward.

I had a friend ask me if I would be okay not having any more kids if I was found to be a carrier and I think I am. We have 4 healthy kids and the risks would be too high for me to want any more. We might look into adopting if it turns out that way.

- We still don't have our sectional that we ordered almost 4 months ago now. Since we wanted a color that was different than their floor model, it had to be a special order and we were told that it would take 60-90 days. It has been MUCH LONGER than that now and we have made multiple phone calls to find out what is going on and we still don't have an answer. DH did finally talk to a manager on Saturday who said he will find out what is going on and let us know today. Well, we'll see...

- So, to top off my wonderful week last week, a critical piece to our dishwasher broke on Saturday. I ordered a replacement part for it, but until it arrives in the next week or two I will be washing dishes by hand... Yuck!!


So, by Saturday all I could do what think about how frustrated I was that we seem to have so many unresolved issues that we are trying to deal with right now. Hopefully by the end of this week some of these issues will be resolved and I will get some answers to my questions. Stay tuned...