Another Month!

I am not sure where the time goes!!!! Another month has passed without me updating this blog.  This month has seen the end of many of our activities. I am glad to have a break from some of the running around!

Let's start with Alex...Alex finished 4th grade on Wednesday. We are both HAPPY to be done. I cannot believe we just finished our 5th year of homeschooling. Alex's science class and homeschool co-op both ended in the last few weeks. He is back to doing aquatic therapy and is LOVING his new PT. They are having so much fun together. It makes all the difference when therapy is fun and not a fight. We are waiting on some new braces to come in that Alex will sleep in. These will help stretch his heel cords which are extremely tight. Alex continues to participate in Taekwondo 2-3 times a week and loves it. He once again had belt testing and is now a blue belt. He has come so far in 8 months. He is excited to be going to a few day camps for the first time this year. Medically, we have had to do some testing this week. I don't have the results yet, but it appears as if we may be adding a new diagnosis for the first time in years.

Alex accepting his blue belt

Alex with his favorite instructor

 Maddy is still taking Kindermusik classes and loves it. She had her first playdate. She is really developing the sweetest little personality. She loves to jump in her jumperoo. She squeals in delight all day long and lights up when she sees her big brother. Alex continues to be absolutely AMAZING with her. Anyone who sees them together can attest to the special relationship they have. Bug is so helpful to me and keeps her entertained when I need to get stuff done. We continue to soak up every minute with our little princess.

We have spent much of the last month with our Make A Wish family. At the end of April, we volunteered at the Wish Upon A Par golf tournament. This was our 3rd year helping at this tournament. We love to see good friends and familiar faces each year. This year was also the first time Alex chose to perform at Wish Night. It was an incredible experience. We had rehearsals several Saturdays in April and May and then attended Wish Night on May 17th. We continued to be blessed by the Make a Wish Organization and the "family" we feel so lucky to be a part of.

We are gearing up this week for another trip to Houston. While we dread the drive and the appointments we are always happy to see good friends. We are also picking Mimi and PopPop up in Houston and bringing them home with us. We can't wait for that.
Thanks for keeping up with us!
Ali

A really long week

Boy am I glad that last week is over!

Alex's fasting challenge was on Monday the 14th. He did great. It is always hard to keep "healthy" kids happy and entertained in a hospital room. Luckily, the nurses were great and let Alex hang out at the nurses station for a while. We also walked laps around the floor. All in all an okay day and great that Alex is going to get some time unhooked from his feeds for the first time in years.

Over the weekend, we had noticed that Maddy had a red spot on the back of her head. It got more red and was hot and inflamed. Monday morning, I headed over to cranial Tech (her band office) before Alex's test started to let them look at it. They quickly determined that the band was not touching that spot and it looked infected. I was told we needed to take her into the pediatrician. By Monday afternoon Maddy was really fussy. We took her in on Tuesday morning. By then it looked horrible. Dr. B determined it was an abscess and cellulitis and that it needed to be drained. So my poor girl had to have it lanced and drained in the office. I am not sure who was more traumatized, Alex or Maddy. He felt so bad for her. He told me if he could have he would have done it for her. Always the best big brother! Dr. B also let me know that he was concerned that this is her second "odd" infection and that he feels like her immune system bears watching. After filling Alex's immunologist in, she felt that Maddy needed to be seen and we rushed to pack up and get on the road to be seen Wednesday morning in Houston before my appointment. We ran a bunch of labs, but will just continue to watch Maddy and pray this was just a fluke!

After Maddy's appt on Wednesday, I had a pre-op appointment and then we had to get her labs done so it wound up being another really LONG day at the hospital.

Thursday was the day of my heart catheterization. I was not really worried about the procedure, but I was so worried how Maddy would do. The little princess won't take a bottle and I wasn't sure how long it would be that she would be without me. My cath went as well as can be expected. The doctors and nurses talked to me the whole time and made sure I was not feeling any pain since that don't normally do these with their patients completely awake :)! The doctors located the hole right away. They did one simple test and determined it did need to be patched. The patch was placed on the first try and I was done in about 2 hours. unfortunately there were no beds available in the hospital so I wound up in recovery for a long time. They were really understanding of our situation and found me a place to nurse Maddy while we waited for a room. maddy and Bruce were allowed to spend the night with me. Once again our dear friends, Ben and Missy came through for us and Buggy got to have a sleepover which he was thrilled about! I was discharged Friday and we mad it home!

Maddy is recovering from her infection and is done with her helmet as of yesterday. We tried to get her back into it on Tuesday and by Tuesday night her infection was flared up again so Dr. B made the call to call it quits. We think she is perfect anyway! I am doing pretty well. I have not been taking it as easy as I should and have had some minor complications. I am really bruised and sore, but doing well overall. I am just so grateful last week is done.

Here are some of our beautiful blue bonnet pictures courtesy of H Parker photography:

Prayer Requests

This will be quick as I am limited on time.

Alex is being admitted this afternoon to the Hospital in Fort Worth. This is a planned admission. For the past six years Alex has been hooked to his feeds 24 hours a day. He carries his backpack everywhere. Once in a while we give him a short break when he is doing something physical for fear of his tube being pulled out. We have always had trouble with his blood sugar dropping and him not feeling well during these times. Endocrinology is admitting Alex to do a modified fasting challenge to see if there is anything we can do to allow Alex to have a 3-4 hour break from feeds during the day. We will start the challenge first thing tomorrow and should be discharged tomorrow evening.

Then we will have a quick turn around as we leave first thing Wednesday morning to Houston. However this time the patient isn't Alex...it's me! When Alex had the hole in his heart closed in June 2012, I was told that I should have my heart checked based on some symptoms I have and a strong family correlation for these types of defects. fast forward a year and I still had not followed up, but my Mom did and she had the same hole. Last month Mom had her hole patched. I had an echocardiogram done in January that showed that I also have the hole. We are going to Houston so I can have a heart cath and have the hole patched if it is big enough to warrant closure. I have been told that there is a 90% chance it will need to be closed based on family history. Both my Mom's and Alex's were pretty significant. I am not as worried about the procedure as I am about my little girl! We have tried and tried, but the spoiled little thing will not take a bottle! We have been assured that she can stay in the hospital with me. (I will be admitted for one night). Hopefully, that is the truth.

Please pray for Alex to handle the fasting challenge okay. Please pray for my procedure and most specifically that the baby can stay at the hospital which will greatly decrease my stress level!

I will do my best to update throughout the week.

Ali