Last week was a long one for us! Beckett had an appointment in Houston with the developmental specialist. This is one of our very last appointments in Houston. We have almost successfully moved all specialists to Dallas at one centralized location. Whew! It has been a job, but I know we will be thankful to have everyone in the same spot! One of these days, I am hoping that we can manage to schedule multiple specialists in one trip! Wouldn't that be a blessing? Besides the convenience of having everyone in one hospital system, this will also be better for Beckett's healthcare. Now the doctors can communicate very easily through there own system. This will be very positive and helpful for him and all who are involved in his care. Our GI in Dallas has helped Beckett so much this year, and we feel very confident in our decision to centralize his healthcare here! We are very thankful for Children's. (I missed expressing this at Thanksgiving, so I will now! :) )
Anyways, back to the developmental appointment, I do believe the doctors instantly fell in love with Beckett and his endearing personality. They were very impressed with his communication and his visual spatial skills. This child can stack some blocks! His biggest struggles seem to be in fine motor and gross motor. He is 38 months and currently at the 18 month level for gross motor skills. I honestly was a bit surprised that his delay was this significant...over a year and a half behind. Currently, Beckett is in speech therapy and occupational therapy. We will be adding physical therapy to this list.
Beckett absolutely loves going to his therapies here. He likes to think he is going to school and often packs a backpack full of treasures to take along with him. We really like his therapy center. Sadly, the looming deadline, January 1, is coming quickly. This is a looming deadline because at this point all the hard work that we have put towards meeting the deductible will start over. Sigh. I have no doubt that we will meet it again in 2014, but it is a burden the first few months of the year. Each therapy session will cost around $70 until we meet that deductible. I think we have decided that we will have to cut back on his speech (at least to just once a week) until the deductible is met since in a turn of events (and after 2 years of quality speech therapy - not to mention being in a family of speech therapists) speech is now his strongest point. We will continue to do everything that we need to do to help Beckett grow and learn...no matter what.
Beckett had a lot of tummy troubles last week. His system just shut down and flushes stopped going through him. The doctors believe it was due to a virus. He never had a fever, but he did get a horrible rash. Often, in children like him, when they get a virus, it takes so much energy to fight the virus that the already sensitive GI system just can't function. This causes a lot of discomfort because not only is the stool not moving, but all the additional liquid that we put in his button to move the stool through, is sitting in there, too. This is very uncomfortable for our little guy causing distention, irritability and exhaustion (as to be expected). We frequented the pediatrician's office a few times, got some x-rays, and eventually got the poop out. Our pediatrician has done a great job. She works very hard for Beckett. She has researched and learned and stepped out of the box to help us.
The ER doctors here were not lying when they said it would be hard for us to live here with a child that has chronic health conditions. It is hard. And when his gut shuts down, and we are in the wrong big city in Texas, it's really hard...because unfortunately you cannot just walk into a hospital and tell them you need a quick x-ray. Then, when Dallas ices over and everything just about shuts down, it is even harder. But I know that God has brought us here to where we are for a reason...well, lots of reasons. I believe that this change in healthcare and this fresh set of eyes has really helped Beckett. He is thriving. He has gained a couple of pounds and grown an inch! He is feeling good...despite the bad days here and there. Some of you may have seen on facebook this story:
For all my friends that have prayed for and supported Beckett--especially during his surgery for his ACE (cecostomy), I have to share this story: This morning we were on our way to Walgreens (again!) to get more golytely. He has been backed up this week so we have are doing 2 flushes a day. I told him we had to go get more flushie, and that precious boy said, "My flushie makes make me happy." What... a special moment it was to hear, out of his little mouth, that the flushes help him and it has all been worth it...even when he has to do two a day. We could see it, but to hear it in his sweet little voice....Our God is so good! Praising him for the relief the surgery has brought our son! Praising God that Beckett is beginning to express the way he feels! And what an amazing perspective this little guy has... Thank you all so much for your prayers, encouragement, and financial support throughout this whole process. We are blessed.
So yes, we still have struggles. And yes, his system still shuts down sometimes. But the bigger picture here is that he is doing well. He is making progress in so many ways. And we are so very thankful.
Thank you for your continued prayers. Thank you all for your encouragement last week when he was struggling with his tummy troubles. I appreciate it so much. And thank you for your prayers during this transition that came with our family's move. The transition in his healthcare has been a long one, but we are just about done. We are blessed to have friends and family like you all. Thanks.
