This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Tuesday, December 25, 2012

Merry Christmas 2012

Merry Merry Christmas from our hearts to yours. My heart is so full as this day comes to an end. I know that "Thanksgiving" was last month but, I  am so thankful for so many things this Christmas. Thankful that we have completely avoided overnight hospital stays for more than six months! Thankful for all of these months of stability we have enjoyed with Lydon. Thankful beyond words for our nurses who have been with us day in and day out for almost 18 months.  They make our every day life so much more bearable. They take the pressure off of me in keeping up with all of our medications, refills, supplies,etc and allow me time to take care of my other responsibilities without feeling guilty or worried about him. They do an excellent job of taking care of him but even more than that, they love him! They have become a part of our family and we love them! I am thankful for our families. They are such a source of strength and support for us. They laugh with us, cry with us, comfort and pray for us. They are always willing to help us, even if when it means cleaning up vomit!  I am thankful for our church and wonderful pastors. They warmly welcome us at each service regardless of how many services we may have missed in between. They frequently let us know how much they love us and pray for us and Lydon. I am thankful that my other two children are doing so well. Regardless of how chaotic and stressful our life may be at times, they seem to be very happy, healthy and full of life! Their grades and behavior is proof of that.   I am thankful for my loving husband who works so hard to make the money, budget the money and take care of everything we need and most of what we want. We have a couple of big issues we are anxious and worried about with Lydon that will be addressed right after the first of the year but for today, we are just thankful and happy and enjoying the moments. For if I have learned anything this year (sadly many times over), it is that tomorrow is not a promised day. We captured some of those moments in these pictures. I plan on posting some more of them but here's a little sneek peak! Merry Christmas to all and to all a good night!

Thursday, December 6, 2012

Fall Update

I have promised a couple of loyal followers that I would do better about blogging.  So in trying to keep my word, here is my best effort.
Our trip to Sea World over the summer

"Look Mom, no hands!"

     As I've said before, we had a great summer. Towards the middle of August Lydon started having some increased vomiting. We kept in contact with our GI and his nurse practitioner and made adjustments accordingly. We also transitioned out of the crib and into a big boy bed. We felt very lucky to find bunk beds where the bottom bunk is just barely off the floor. Lydon did awesome with the transition although he still tells us he want his baby bed back!

Aidans 7th Birthday in September

     School started off with a bang for the other two and we had a couple meeting with our local elementary school about our preschool options for Lydon. It was determined that Lydon does not enough of an "educational" deficit to qualify for services at this time.  What that means is that Lydon does have some deficits, his medical issues being his biggest of course, but there is not enough of an educational need for him to attend school at this time.  So, we found out what we already knew. Our boy is a smarty and thank goodness none of his issues have effected his brain! We were advised to meet with the school officials again in the spring of next school year so that we can figure out how we can meet Lydons medical issues and provide him the best education.  At this time, he is pretty close to be on target developmentally but physically he could not meet the demands of a regular school day.
     In early September after we realized Lydon wouldnt be going to school any time soon, we increased our family and adopted a precious little "brother" for Lydon. He's an adorable little Schnauzer/Poodle mix.  He's a great fit for our family and Lydon loves him...most of the time!
"Loving life with my fav lil cuz!"

Lydon and Baby Nate

Throughout September and October, Lydon continued to deal with vomiting and the blue spells. We met with our cardiologist and neurologist and repeated some testing. The results showed that Ly's heart looks great! What a relief!! It was the opinion among both doctors that during times of physical exertion, activity, or illness, Lydon doesnt have the total amount of energy that he needs so his body is pulling oxygen from areas where it isn't needed (his nose, mouth/lips, and fingertips) to provide that oxygen to his more vital organs that needs it more. In order to help this autonomic dysfunction and to keep him more hydrated from all of the vomiting, we started him on continuous pedialyte at night. We went to Dewberry Farms in late October. Lydon had a great day and enjoyed being with his favorite cousin baby Nate, Uncle and Aunt Kimmy,Grandmommy and Pawpaw. We even met a little boy from England that also had a gj-tube. Lydon thought it was so neat to see another little boy with a "button" just like he has. We also met with Genetics. They suggested sending off another gallon tube of blood to look at some other possible metabolic disorders that may be causing Lydons issues. A couple of tubes were drawn for a genetic test called the whole genome test.  It is a very detailed test that will look at all genetic causes for Lydons problems.  We hope to get the results back sometime in February.

Beautiful, Happy, Perfect Day!

     That brings us to our somewhat eventful November.Sissy started Drivers Ed. The first three weeks involved some long busy days for her but she did it!  It seems that big brother Aidan has started having migraines so Mom has had to pick him up from school a few days and get him into to see a neurologist. We have a pretty good plan in place and so far have only had one that got really bad and put Bubby in bed for the day. ;( We  all suffered with the seasonal allergies that's all to familiar to southeast Texas in November. That didn't agree with Lydon's little literally little airway. So, we had a very scary night with croup and stridor, coughing and fever. Luckily, this wasnt Mommy's first rodeo and we had the fluids, meds, and oxygen that we needed to stay stable through the night.  We were seen in the pedi's office first thing in the morning and got even more meds but we made it through an illness without a hospitalization and saved Thanksgiving for Mommy and Lydon. We had a great Thanksgiving. Lydon wasnt really able to eat because of all of the activity going on but he couldnt have been happier to be able to play with all of his cousins.
     So far December has been pretty kind to us health wise.  We do have an upcoming appointment with ENT to again discuss Lydons airway issue and see if there is anything else we can do to prevent the recurrent croup/stridor. Lydon is extremely excited about Christmas this year.  He loves all of the lights, talks about Santa incessantly and wants everything he sees advertised. We are hoping we can somehow fit in a family photo session and get Christmas cards out. Regardless, we are looking forward to the rest of the holiday season and all of the joy it brings.