Matthew's first beach trip!

Beach Bound!!!!

We know it's been a while since we have updated this blog....we have decided to keep most of Matthew's medical issues private within emails, so if we have not included you in our email update, please email us so we can include you! We don't want to leave anyone out that would like to be included, but we don't have everyone's email addresses.

Things have been going pretty well for us these past few weeks. Chris and I decided to give Matthew a break from doctors, tests, and procedures these past 2 weeks as it had just gotten to be too much for him. (and for us!!!) Things were going pretty well and the new medication for Matthew's episodes seemed to be working pretty well - we were very thankful and very hopeful. We were very busy learning about sign language and having our weekly classes with our teacher from the deaf and hard of hearing program. Matthew is doing pretty well learning his signs, and our goal is to stay 2 signs ahead of him or else we are in trouble as the teacher told us :)

We had Matthew baptized last Sunday and it was a beautiful day. My sister and Chris's brother are Matthews godparents, and it was a very special day. We were surrounded by dear friends and family, and had a lovely gathering here at the house after the baptism at church. It was a special time for everyone.

We decided to take Matthew to the beach for the very first time this past week-end, and what a wonderful time it was for all of us!!! What an amazing experience it was to see the beach through Matthew's eyes, expressions, and behaviors. At one point, we talked about not being able to hear the rush of the ocean, the seagulls, the sounds of kids playing, the planes overhead, and the whistle of the lifeguard.........you see, we have always heard things so we would be disappointed to not be able to hear those relaxing waves, etc. Through Matthew's experience though, it didn't affect him in any way that he could not hear anything - it was still absolutely amazing and wonderful to him! What an appreciation we all have for the gift of hearing, but yet even more an appreciation for Matthew and all he is teaching us about life. It is amazing how his other senses kick into gear and he uses sight and touch to experience what you and I may use our ears for!!! Very cool....

Matthew wasn't too sure about the pool, sand, or ocean for the first few minutes - and then we couldn't stop him from digging in the sand, running to the ocean's edge, or jumping off the side of the pool into our arms! His smiles, giggles, and long lasting energy and excitement was so memorable! We truly treasured every moment of the week-end. We were lucky enough to have my Mom, sister, and brother there as well - so it was extra special sharing those "firsts" with them! We hope you enjoy some of the MANY pictures we took this week-end at the beach! We also had the first ice cream cone, hanging out in Stone Harbor, and many other fun moments. He loved going out to eat and was so well behaved! Everything was just perfect.

When we came back home, we came back to a bit of reality as Matthew's episodes are getting more intense once again. They started last week during the week, and have progressed since then. The past 2 nights have been dreadful watching his poor little body all over the place and not sleeping....so I look rather dreadful myself with no sleep, and the motherly worries and anxiety taking back over....I spoke to the neurologist today and we are increasing his medicine again to see if it helps. I need to take him for blood work and an EKG tomorrow which will work out better to have him with me as I give him the first increased dose tomorrow morning. Once I see how he is, I will take him to daycare after his tests. Once we have the blood results, we may have to move up his second MRI and lumbar puncture to see if we can have a definitive diagnosis and go from there. Unfortunately, there are not many treatments if Matthew does indeed have a progressive disease - there is only symptom management which is kind of what we are doing now. So, please continue to keep him in your prayers as we are about to embark on more tests and appointments. We did meet the cochlear implant ENT surgeon last week, and need to complete the rest of the testing July 2nd at CHOP to see if he is indeed a candidate for the implants. We are anxiously awaiting all of that because we so desperately want them done ASAP so we can see if he will be able to learn to hear sounds and communicate with us! We also meet the urologist July 6th, and see what surgeries Matthew will need to correct that part too! Wow - and to think we used to think we were devastated at him being deaf - haha, that part seems easy now! (Well, not really, but in the big picture - it does :)

Enjoy the new pictures of Matthew and his first adventure at the beach! He just lights up our lives in more ways that we ever imagined.