Tuesday, September 30, 2008
Our pediatrician wanted to have all our children tested to see if they may have characteristics of Alport's Syndrome. Alport's Syndrome is a condition that affects connective tissue in the ears (progressive hearing loss), eyes (cataract's), and kidneys (filtering toxins out of blood). The initial testing beings on urine specimens. Andrew and Sophie's tests came back negative for blood which was great! Price has had 2 urinalysis's' both showing small amounts of blood. Hematura, blood in urine, is a characteristic of Alport's sydrome. So needless to say, yesterday I was a complete mess. With the syndrome comes complete kidney failure in males between the ages of 20 and 30 years of age. But after talking with a nephrologist, he doesn't think this is the case with Price. There should be a family history that shows kidney disease. After talking with family members there is no one who has ever had this problem on either Mike or I's side. So that is great news. Although we now have to monitor Price to make sure the hematuria doesn't get worse. Doc said that some children have this issue and grow out of it as they get older. So we will continue to have checkups to make sure all stays the same or goes away. THANK YOU JESUS!!! But don't think I wasn't on my hands and knees begging Him for my children's health. Oh this week I also decided that I was going to start selling Mary Kay. I have been wanting to for a long time but now that money is getting tight, I thought I would give it a try. My goal is to have a debt free Christmas. So we shall see how it goes. www.marykay.com/mikki.spence if you would like to check out our products or make a purchase. Hope everyone is having a great week! The cooler weather sure is nice.
Friday, September 26, 2008
I am so excited for Sophie that she will soon experience the gift of hearing. It is still amazing to me the technology that is going to be enabling her nerve and brain to hear. You know some people may say that we should have left her ears like they were, that God made her that way. But you know God gave others the gift of knowledge and extrinsic thought to be able to engineer a device that will allow sound to be transfered into electrical impulses in order to stimulate a tiny little nerve that allows a person to interpret it as true sound. Their wisdom is helping my little girl and thousands of others experience what most of us take for granted, SOUND. THANK YOU TO ALL OF THOSE PEOPLE INVOLVED IN MAKING THIS SUCH A BLESSING FOR THOSE WHO CANNOT HEAR. I wonder if she is going to cry when she hears the first beeps and buzzes through her CI? I wonder if she is going to want to keep it on? I think she is going to do great, regardless of her initial reaction. Price is so excited about Sophie's new "magic ear." He said he wants one of those too! I think this is going to be an exciting time for our entire family. I can't wait!!!!! I am going to video her activation and will try to post on our blog (never done that before).
Friday, September 19, 2008
Has anyone ever had one of those weeks where on Friday you finally get home from working a 40 hour week job, taken all of your kids to at least one doctor appt, driven to New Orleans for a 15 minute checkup, taken two children to therapy and had to fit in sleep and food and try to get a little sanity along the way????? Well that was my week...Sophie had her checkup from her surgery and all is great! Her incision looks wonderful and is healing just fine. Her ear is still draining a little. But all in all she is back to her little prissy self! You can definitely tell she is not hearing anything from that ear. Her activation is October 3rd. YAY!!!!!!!!!!!!! I can't wait. Price and Andrew are both doing well. Andrew started ADD medication this week. I have been told for about 2 years from his teachers that they thought he should be tested. Last year he was diagnosed but I was so scared to give him medication for it. I finally was able to see this year how much he is struggling and decided to give it a try. And we have already seen a difference. Andrew says he feels more focused at school and he is feeling more confident in his Math class. Andrew, Price and Sophie all have allergy issues this week. So we are battling runny noses and red watery eyes and coughs. Price and Sophie's therapy is going great. Shelley, Sophie's therapist, says she is doing great. She wants to videotape her next week so she can use it when she quest speaks at LSU and Southeastern. Price is coming along with his speech. Sometimes I feel he needs more therapy because I can't really understand much of what he is saying but then there are times were I think he is doing well. The only reason Sophie is able to see Shelley is because Early Steps is providing the services for her. Our insurance does not cover Shelley, the only AVT in Louisiana. The therapist that is working with Price has only had 4 other HOH children in her career. So I am not sure what I should do??? Price did get evaluated in August thru the Livingston Parish School board but we have not yet met with the IEP coordinator to review the eval and put the options on the table of what he will be eligible for. So I am kinda caught in limbo with that. AHHHH!!! Gosh! I feel like I have a lot going on...but I don't like to complain. Next week will be better, less stress!!
Tuesday, September 9, 2008
Surgery went great! Sophie had been such a trooper. Dr. Molony said the surgery was a success and he thinks that she will recover very well. She does look a little like someone who has had major brain surgery. Her bandages were a little overwhelming at first but they are definitely serving a purpose. The pressure from the tight bandages are to allow the extra blood to be forced out of her incision instead of swelling behind her skin. She is sleeping soundly with her bottle of pedialite tightly in one hand and her baby doll in the other. Everyone's prayers have definitely been at work today for Sophie. Thank you so much for taking time out and thinking of my baby girl! Thanks also to KK and ReRe for being there for me today. I got very emotional when all the Dr's and nurses wanted to go over all the risks of surgery and anesthesia. I could not have done it without them. KK is such a great cousin to Sophie! Sophie loves her so much!!!
Monday, September 8, 2008
We are now here at the Brent House Hotel. Sophie's surgery is for 8:00 am tomorrow morning. My mom and my neice, KK, came with Sophie and I. Mike was unable to get off of work due to all the work he missed because of the hurricane. Here are a few pics of Sophie on the way over in the car and in the hotel room. We ate at Picadilly for dinner tonight. YUMMO!!! We have just been playing around in the hotel room and laughing at Sophie do funny tricks:)
Friday, September 5, 2008
This last week has definitely gotten my mind off of Sophie's surgery. All the aftermath after Hurricane Gustave has sure kept us busy. But now as the dust settles, I start to worry about surgery day. I know that it is just a motherly feeling we have when our children have to undergo a hospital stay. I am more worried about the anesthesia more than anything. But she will be well taken care of and the Lord will keep her under His wings. We were able to reschedule our hotel room but they said that Emergency workers have been occupying the rooms and we may not have our room when we get there. Luckily my sister lives about 30 minutes from New Orleans in Covington so we may have to camp out there the night after the surgery. We have to stay over night near New Orleans because Sophie has a follow appt scheduled the day after surgery at the Dr.'s office. All has worked out so far so I am sure that this will too!
Thursday, September 4, 2008
OK, we are back in action. Although we don't have power at our house, my parents got theirs back last night and cable and internet just now (7:43 pm, Thursday). It actually wasn't that bad. The humidity is what made us so sticky and hot!!! But thank you Jesus for letting us make it through it without going crazy. The heat does make your temper rise a bit! The screaming children who are running around with diapers and underwear on because it is too sweltering to put clothes on doesn't make the temperature feel any cooler either. Gosh, I am glad it is over...Although my parents will have to put up with us until our power comes back on...they say 1-2 weeks. YIKES!! Sophie's CI surgery was scheduled for next Thursday the 11th in New Orleans, but they called today to move it up to Tuesday the 9th due to a cancellation. YEAH!!!! I know it is only 2 days but that means we are 2 days closer to our baby girl hearing!!! I just hope we can now schedule a hotel room for that night...