Logan update

• It has been 4 weeks and two days since Logan came home. Each day goes faster than the one before. Each day brings happiness and frustration. Each day brings new burst of energy and pure exhaustion.
  Logan came home with the feeding tube and that first week we were so tired. Thank goodness we were on an emotional high of finally being home, otherwise we may not have survived! We HAD to feed Logan every three hours. We would try the bottle for 30 minutes, tube feed what was left, and then I would pump. This whole process took over an hour...and then it would start over again less than two hours later. Each day Logan was getting stronger with his eating and taking more of his bottle. I had a "feeding chart" where I would record how much he took and he would get a STICKER on it if he took a whole feed by mouth! When we went to our first doctor visit 6 days after being home, he had 16 stickers in a row! The doctor told us to "PULL THE TUBE!" We did and haven't looked back! Six days at home and the feeding tube was history!! Praise God!! Logan gave us one run for our money when he pulled it out on day 3 at home. I had to put it back in. Bill made the perfect "coaching partner" with the pre-game pep talk and the post game congratulations and I managed to the get the tube back in on my own!
  Since being home we have had several doctor visits:
  Cardiology: At the cardiology appointment, Logan had an EKG and ultrasound of his heart. We learned that the pulmonary hypertension (what put us at Children's in the first place) is gone. Logan has a small VSD (hole between the ventricles) that is so small they will not repair. He also has a small ASD (hole between the atriums) that needs to close by age 3. If it does not close, they will do surgery, which can probably be done by a catheter (no open heart surgery). We are so very blessed to have no cardiac defects, as 50% of all kids with DS do have a major heart defect.
  Genetics: We saw the head geneticist at the Downs Syndrome Clinic. We will visit the clinic at 6 months of age and every year after. Each appointment will be similiar to a pediatrician appointment, except they will check for things that the pediatrician wouldn't normally check on a child. They will check for thyroid issues. So far, Logan has none. They will check for bowel issues. So far, Logan has none. They will check for leukemia. So far, Logan's blood work looks great. Everything they told us was very positive and promising. The Down Syndrome group in St. Louis is wonderful. We already have a new parent support person. We have options of playgroups and mothers night out and many other activities for the whole family. I can't say enough positive things about how well we have been treated there. What a blessing to have such an amazing support system!
  NICU followup: We went to our NICU followup yesterday. It, too, is like a glorified pediatrician visit. They checked him all out and answered all our questions. The only thing new that we gained from this visit is that Logan now weighs 9 pounds 9 ounces!
  Occupational therapy: We had our evaluation for OT through First Steps and will write our IFSP plan next week for ongoing therapy sessions. When the therapist was here, Logan worked on tracking with his eyes, reaching,and feeding.
  Other fun stuff: Logan was taken to show and tell at Luke and Lora's co-op group. He was a hit, although he slept through most of it. All three kids love their brother more than I ever thought they could. Luke loves to read to him. Lora loves to snuggle with him. Lexi loves to shake all her toys in his face and overstimulate him.
  He is on a good schedule with sleeping and eating and giving us 4-6 hours at a time to sleep at night. He is my little PT buddy and we do exercises throughout the day. He can now push up onto his elbows on his tummy, has rolled tummy to back several times (although not purposefully!) and will bat at toys above his head (again, not purposeful!) He is getting better with head control and beginning to focus (briefly) on our faces and objects.
  Logan is our little pride and joy and after two months, we can't imagine life without him. Thank you so much for the continued support and prayers. We ask that you continue to keep Logan in your prayers as he works on his developmental skills. We can't wait to continue to update you with praises as he ages.