Alex and Maddy

Alex and Maddy

Thursday, July 22, 2010

This is the Life!

We are in NC and Alex and I have decided we were made to be beach bums! As I have said before we look forward to this vacation all year long. We count down the days as it gets closer and dream up all the fun we are going to have. Well...2 days in and it is a good as advertised.

We arrived Tuesday around lunchtime and Alex ran off the plane into Mimi's waiting arms! We got "home" and quickly got unpacked. Then we deaccessed Alex's port and into the pool we went. We didn't get out of the pool until dinnertime. It was early to bed.

Wednesday we slept in and then headed to the beach. Alex and I both LOVE the beach! In true Alex fashion it took no time at all for Alex to make a new friend. And it shouldn't surprise anyone that it was a girl! Alex and Bailey were best buddies quickly and Mom and I got to sit in our chairs while the two of them entertained each other for hours. We came home in time for a nap. After naptime it was back in the pool and Alex did great! He took his life jacket off and was swimming with me just barely holding his shorts. It was dinnertime again before we came in for the night. After a quick shower it was time to reaccess his port and get some much needed fluids. (He was getting dehydrated for sure.)

Today was a quiet day. But we did get to have lunch with one of our favorite people Ms. Pat! She is like a surrogate Grandma and loves Alex. Then we all napped all afternoon. I told you this is the life!!!!

Tomorrow Grandpa comes and then Saturday Aunt Jenn-Jenn and Skye-Skye. We can't wait for more adventures.


Friday, July 16, 2010

To Houston and Back!

Sorry for the lack of updates! I have been under the weather and it has really drained my energy. Luckily I dragged myself to the docotr yesterday and am on antibiotics for a sinus infection so hopefully I will be back to myself soon.

Alex and I left Monday to head for Houston. I left in less then a happy state of mind! We originally had 5 appts scheduled over 2 days. Over the last few weeks the appts were cancelled one by one. Monday morning as I was about to leave I got a call cancelling the fourth of five appts. mad doesn't even begin to explain my feelings at that point! Luckily, we arrived at the Knights house to have a fun afternoon. We deaccessed the 2 boys ports and let the kids play in the water in the backyard while Missy and I sat and chatted. Then we went to my very favorite mexican restaurant for dinner. We will forever be grateful to the Knights for being such good friends and opening their house to us. It has truly become a second home to us. You know you are there a lot when the dog doesn't even bark at you!!!

Tuesday was our GI appt. (At least they didn't cancel!) We are thrilled to say that we are done with TPN (IV nutrition)!!!! Alex is back to just his tube feeds. We talked about some long term goals with Alex. The GI and his dietician were happy with the weight he put on during the 3 months on TPN (about 3.5-4 lbs). The hope now is that he can hold on to that weight.

Luckily, Dr. Koenig emailed and set up a time to see Alex on Wednesday in her clinic. I cannot begin to explain the love Alex has for Dr. K. As soon as he saw her he went running into her arms. The two of them caught up while I met with the medical students to fill them in on all the organ systems. Then Dr. K and Alex came back to finish the appt. We have decided to do another spine MRI in a few more months instead of now to check on his syrinx (fluid in his spinal cord). We discussed some hematology issues and she let me know that she would like to do an EEG the next time he is inpatient to see if he is having any seizures now that he is on Keppra. Other then that she is pleased with where he is.

We headed home Wednesday afternoon and I have been crazy trying to get everything ready for our big trip. We are beyond excited to leave Tuesday to head to NC for 3 weeks. Alex and I look forward all year to good times spent with friends and family, not to mention the pool and the beach.

We ask for prayers for safe travels, for Alex's health, for Bruce to find the "perfect job", for insurance woes to be over and for us to be able to relax and enjoy our vacation! Thank you for continuing to walk this journey with us. We are so blessed to have you in our lives!

Friday, July 9, 2010

Summer Vacation

Alex has sure made up for our lack of sleep over the weekend this week! He has been sleeping in and taking extra long naps. It is nice to be in our "normal" routine and see Alex thrive in the norm. He is like his mother and likes things organized for sure!

Tuesday we had therapy and Alex did a great job. We then came home to finish up our next to last day of school. The rest of Tuesday was a nice quiet, relaxed day.

Wednesday was Alex's six year check up. Dr. Benzick and nurse Judy hold such a dear place in our hearts. They have been such an important part of Alex's care and have gone out of their way for years to try and make sure Alex gets the best care possible! Overall, Dr. Benzick was pleased with where we are. He is still concerned about his growth/weight. Even after gaining 4 lbs over the last 4 months on TPN, Alex is not on the chart for weight and his BMI is barely holding on. He wants us to keep a close eye on this as he is concerned at some point his lack of nutritional reserves will start to effect other organs. He was also upset that we still have not seen Cardiology. Our appt has been cancelled 3 times in Houston. He made me promise that if our next appt is cancelled that we will see someone locally. After the doctor appt we met Allison, Brookeand Peyton for a movie and McDonald's. As always Alex loved every minute with "his girls"!

Yesterday was officially our LAST DAY OF KINDERGARTEN!!!! It was met with a mix of excitement and sadness. I am amazed at how far Alex has come this year. His independence is starting to take off (finally) and his academic skills are astounding. Now if his poor fine motor skills would catch up we would be in business. It is unusual that a mother gets to experience a child's learning as I have this year and to watch the joy and pride that he has when he masters a skill is a true gift. While some days I would love to boot his little heiny out the door, for the most part I am so lucky for every precious minute I get to share with my Buggy.

Last night I started to not feel well and woke up this morning feeling pretty bad. Please pray fro my health as we have a couple really busy weeks coming up. Of course I am worried Bug will pick up whatever I have.

Now for two exciting things that happened this week....

Alex was approved by Make A Wish Foundation to be granted a wish. He was officially placed on their list and we will start the process when we get home from NC. Alex is very excited and full of ideas! We will keep you posted throughout this process as Buggy experiences this special time.

Next, some of you may remember that Alex was fortunate to enjoy a professional photoshoot through The Littlest Heroes Project and Starglo Photo. I received my photos and CD yesterday and they are gorgeous!!!

As always we ask that you keep Alex's health and our financial worries in your prayers. Thank you for blessing us by being a part of our lives!

Monday, July 5, 2010

From Ordinary to Extrordinary!

What a great weekend we have had!

After almost 10 days of seclusion As Alex recovered from being sick, we had decided to make plans for the Fourth! We had decided to meet friends on the 3rd for a festival and see fireworks in an adjoining town. However, the appropriately named Hurricane Alex had other thoughts. After several days of heavy rains, Allison and I decided it would be too muddy and that we couldn't meet up for fireworks. Alex was devestated that we weren't going to continue our tradition of watching fireworks with his beloved Brookie! We promised him that we would drive and park and watch the fireworks from the car. So Saturday night at 8:30 we piled in the car and found a place to pull over. Little did we know that we had found the PERFECT spot. The fireworks went off right in front of us!Alex really liked the fireworks this year. He oohed and aahed and thoroughly enjoyed it. So while it wasn't the celebration we had planned we were happy with our fireworks experience and ready to move on.

Yesterday, we planned on once again having a quiet day. We had just sat down to introduce Alex to the great movie "Goonies" when Bruce's phone rang. It was our good friends and neighbors, Todd and Rosa. They have an awesome boat theat they have been gracious enough to take us out on in the past. They were letting us know that they were going to head out to Lake Grapevine to watch fireworks from the boat and wanted us to join them! We quickly scrambled to pack a bag, get dinner, get in bathing suits and deaccess Alex's port. Then we were off to the lake. What a fun night! Alex swam and played. He watched fireworks from the water and was up entirely TOO late! But it was worth every minute! He chattered and laughed and loved every minnute. He even called to tell Grandpa he wants to buy his boat! (I wonder where he's coming up with the money for that???) We have already made plans to head out on the boat again later this week.

So while we were home way too late and had to then quickly reaccess Buggy's port and I will probably pay the price today with a cranky child who didn't get enough sleep, the memories we made will last a lifetime!


Saturday, July 3, 2010

Finally Better!

We have had a very quiet week. We have stayed in and just had quiet days. Alex has been on Augmentin for 5 days and he is feeling much better. He still has the remnants of a cough and stuffy nose, but otherwise he is fine.

We have another quiet week this week and then the craziness starts! We leave for Houston a week from Monday. We have several appts and then we are home for a few days before heading to NC for our much anticipated 3 week vacation in NC!!!!! As soon as we come back bruce's Mom and sister are coming for a few days. So the rest of our summer will be busy to say the least.

Thanks for checking in!