Busy, Busy, Busy!!!!

Our lives are going to be so busy, restful, and then busy again. Monday the carpet cleaners are coming. After they leave I have a long list of errands to run. William will take Mary to swim lessons in the evenings after dinner. Tuesday and Wednesday the girls will go to Mrs. Debbie's since I have full day professional development trainings. On Thursday, I will be packing all of our bags to go to the BEACH!!!! On Friday, I will take Mary to swim lessons early and then start packing the car. Hopefully, William can catch a ride to work with a coworker and we will pick him up at 3 to head to Bellville. On Saturday, Granny and Mary will go to a wedding at 2. As soon as they are home we will hop in the car and make the 8+ hour drive to Perdido Key, FL (near Pensicola). Grandma Betty will also make the drive from Georgia to join for a week long of fun on the beach. Then we'll pack the bags and head back to Granny's on Saturday morning. Then we'll drive back to McKinney on Sunday. Amy will go back to full time daycare when we return. I have a team leader meeting Monday morning. On Tuesday, I have have a first grade team meeting. Wednesday is my LAST DAY OF SUMMER! :( I go back to work on Thursday. We have 7 days of inservice and then the kids come on Mon, Aug 24.

Another week on the farm!

Saturday morning I loaded up the girls and we headed to Bellville. Later that afternoon we had some rain. We decided to sit out on the patio and watch it. At about 7:15 lightening struck VERY close to the house. It scared all of us. As soon as it hit the electricity went out. Mom called it in. Since we knew it would be a while before it came back on we decided to go for a car ride. On the way out we picked up Grandma b/c she was out too. We were the only 2 out in the area. We went down to the grain bins to see Uncle Fred and Greg. A little after 8 we decided to head back home. Luckily earlier in the day the kids played in the kiddie pool. Amy took a bath outside by the light of the car. We lit candles and open windows. Mary was having a hard time grasping this concept. We have NEVER lost power in McKinney. After playing Scabble Slam (very fun!!) we all crawled into Granny's bed. Her room was the only one with a window letting in a cool breeze. I don't think I got much sleep that night with Mary kicking me in the head and the nice breeze stopped at about 3am. Mary had to sleep the opposite way so she could see the moon light coming in the window. At 7 am we still had NO electricity. We decided to see if we could figure out how to get the county water line connected to the house so we could at least have water. We spent about 15 minutes trying to get it with no luck. Just as we were calling for help, the electric company truck came driving down the road. About 10 minutes later we had electricity again! We took showers and got ready for church. Then we had lunch with Brady. That afternoon Jackson and Kathryn came over to play. Then it was time to go to Grandma's for dinner. All 5 of the cousins were there. I think Thanksgiving will be a little crazy this year! On Monday we went to Brenham to meet the triplets and visit with Adrienne. They are just adorable. On Tuesday, we went to see Brady and then headed to Space Center Houston. Aunt Cynthia went with us. Mary had a great see all of the astronaut outfits. Then we had a nice lunch out. We went back to Aunt Cynthia's for nap time. When Mary woke up she got to swim in their pool with Pamela. Then we enjoyed dinner and hopped back in the car to go home. On Wednesday, we went shopping and had dinner at Galileo's! When we got home we thought it would be fun to go on one more gator ride. Just as we got to the back pasture it DIED on us. It wouldn't restart. We had about 30 cows swarming us because they thought we had food for them. Mary started to get scared. We climbed through the fence, over a gate, and walked almost a mile while carrying the kids. Luckily we made it home just as it was getting dark and the rain clouds stayed away. When William got home that night he found a note from the city that our water had been cutoff due to a water leak. I guess a neighbor called it in. No telling how long it was bubbling into the street. I'm expecting a very ugly water bill next month!!! Thursday morning Granny went back to work and we came back to McKinney. William called a plumber to come out first thing to fix it. By the time we got home around 1 it had been fixed. Enjoy the pics of our visit!

Amy's One Year Pictures

Amy's Dr Visit

Amy went today for her 1 year well baby check up. She weighs 18 lbs, 7 oz (10th%tile) and 29 1/2 in (61st%tile). The doctor is not too concerned about her weight right now because she is still growing and hasn't lost any weight. She got 2 shots today and did okay. She will go back in October for her 15 month well baby visit. She is talking more and using her signs more. She can now say ball and baby (sounds more like ba-ba). She will sign for milk, more, bye-bye, hi, tired/night-night, and light. She is bottle free and I fed her for the last time on her birthday! I made my goal again of 1 year. She only drinks from sippy cups now. She is still taking a morning nap, but doesn't have to. hich is nice because we can go out and do more things in the morning.

I plan on leaving with the girls on Saturday morning to go see Granny. We will probably stay until Thursday morning. We plan on going to Space Center Houston while we are there.

Amy Turns One Year Old!!!!

Wow! It is hard to believe but our sweet little Amy has turned one year old today. Mary was so excited to run into her room this morning to tell her happy birthday. She will go see Dr. Alvis on Tuesday for her 1 year check up. Here are her monthly pictures. Enjoy!

All you wanted to know about Hereditary Spherocytosis

Amy had her follow up appointment with Dr. Cavalier today at Children's Medical Center at Legacy in Plano. We are so lucky they just built this new campus and are close by, about 20 minutes.

She gave us lots of information about hereditary spherocytosis (HS). They did a complete blood count (CBC) today and found that her iron levels were normal today. She recommended that we stop the iron supplement for 3 months and then come back in October to do another CBC to check the levels. We also got to see her blood under the microscope and we could really see the difference in the cells. She does have some normal red blood (RB) cells. Normal RB cells live for 120 days, and spherocytes live for only 20-40 days. Her case is considered mild. Some things we have to look out for is if she becomes tired easily, loses energy, shortness of breath, pale skin (all anemia related), yellow eyes and skin (jaundice related). Her bone marrow is working overtime to make new RB cells. Sometimes infections/viruses slow down the bone marrow and cause her blood counts to drop. This results in anemia. Each time she is sick they will most likely do a CBC to check her levels. If her levels drop too low she will need a blood tranfusion.

She doesn't and hasn't had a large spleen. RB cells are mostly destroyed by the spleen. Since her spleen is working so hard to get rid of the abnormal cells, it can enlarge. Everytime she goes for a checkup they will examine her spleen. About 50% of all HS patients will have their spleens removed, however it would not be done before the age of 2, but usually after 5. This can help by allowing the blood count to return to normal. This is the only place in the body where RB cells in HS are prematurely destroyed. However, once it is removed she is more likely to become sick. If her symptoms remain mild she will most likely not have it removed. Another complication that many have with HS is gallstones. This is due to the breakdown of the bilirubin (waste product from RB cells that have been destroyeed) in the gallbladder. Removing the gallbladder can take care of this and elimanate future problems with gallstones. We also learned today that either William or I most likely have it. It is possible that her genes spontaneous mutated, however, HS is an autosomal dominant disorder. About 75% of children diagnosed with HS have a parent with it. Amy has a 50/50 chance of passing it on to her children. HS is found equally in both genders.

She might not be able to participate in contact sports or other strenuous activities. When we think she is ready for sports we will need to discuss it with the doctor. If her spleen is large, then it is possible that she will not be allowed to play.

She is more likely to become sick and it will take her longer to recover, even is she still has her spleen. She did talk to us indepth about the parvovirus (fifths diseas), which will only happen to her once. This highly contagious virus stops the bone marrow production of new RB cells and her blood counts drop. If/When she has this virus it would require a blood transfusion.

She can donate blood when she is older. However, if she is anemic she would not be able to give.

We will go back mid October for another CBC since we took her off of the iron. If her levels continue to be normal, then we won't have to give the iron supplements. If she is low, then we would go back to it. She did say that she would like to see her at least every 6 months for a while, then eventually go to annual appointments.

Next time William and I have a doctors appointment we can request to be tested to see if we are carriers of HS.

They also gave us a great website to access information about HS
www.UTSouthwestern.edu
in search box at top of page type "hereditary Spherocytosis"
click on the first section: Hereditary Spherocytosis (HS)
then look over to the right for quick links "A guide for patients and their families"

Amy's First Birthday Party

It was so great for friends and neighbors to get together to celebrate Amy's first birthday. We enjoyed a mexican fiesta and chocolate cake!

Happy 4th of July

This morning we got up and went to hike the Wood Duck trail at the Heard. This was Granny first time we went and our longest hike yet, about 2 miles. ***NEW PICTURES ADDED TO SLIDESHOW, JULY 8***

Spherocytosis is confirmed

The doctor called this morning to tell me that she got the blood work back and was able to review the reports. This test does confirm that she does have hereditary spherocytosis. We will meet with the doctor again on the morning of July 9. They will go over with us her life long "plan" and give us more information about this disorder. They will do a quick finger prick to do another CBC. She will have to go atleast annually to Children's to have blood work done and to check her spleen.

Now the mystery question is...Who in our families has it, but has not been diagnosed??????????!!!!!!!!

What questions do you have about this disorder? They might be one's that we didn't think about and might be good to ask the doctor at our next appointment. Thanks!

For more info on spherocytosis
http://en.wikipedia.org/wiki/Spherocytosis
http://www.spherocytosis.org