Clinic in Omaha

Our Fourth trip to Omaha was, what is the word, different??? The way down (over) was almost unbearable. Trinity was not comfortable and did not want to be in the car. She went 8 hours with out food or breast milk because she just simply did not want it. But she was upset that she was so hungry as well. We ended up stopping early just to get her out of the car. That meant we had some making up to do the next day! Like an extra 3 hours!!
Anyway, the next day was better but LONG!! We ended up not getting to Omaha until around 11 pm our time...well past the kid's bed times. Boy, we were all hungry and ready for bed!! We were due in the following day for Trinity's infusion at noon. Her infusion went well. On the other hand, Trinity was ABSOLUTELY over it!!! Every time someone stepped into her room that she didn't know, she cried and tried to jump out of my arms as if to run away. I felt terrible! I ended up crying with her. It is just so hard to watch your child go through something and experience pain and you can do NOTHING to help! I have to say that is one of the hardest parts about OI. We also got a DEXA scan (bone density scan) while our infusion was running. Which saves time. Trinity actually held still even though the day had been hard. I was impressed!
We got through the infusion...it didn't seem like it would ever end but it did. We ended up finally getting discharged around 9 p.m. our time. Again, past the kid's bed times. We found our selves in the same position as the night before. Luckily, dinner was provided by the Rainbow House, the place where we stay while in Omaha, which someone donated the food and time to cook it. It was a good ending to a stressful day. We were due back in to the hospital at 8 a.m. for clinic. (Clinic is where we get to see all her doctors back to back.)
At clinic we receive the bone density scan results which were extremely poor! Her Orthopedic surgeon also stated that her problems are going to lie within her lower legs bones. They look like C's on x-ray!!! Her femurs have seemed to straighten a little with growth so that is a little good news. We are due back in for Clinic in June/July to reassess her bone density and look into planning her rodding surgery. We may even have company! I have been notified recently that more prayers have been answered. Our good friends, the Busby's, are going to be traveling to Omaha!!! Thank you God!!!! And possibly around the same time we are going! We are truly excited!!!
We ended up getting done with Clinic at 1 pm our time and could have started back home. We decided we were EXHAUSTED and we would rest up one more night and travel out first thing in the morning. The way back was rough as well. We hit a heavy snow storm by evening on day 1 of traveling home. The storm last all night and we woke up to a couple of inches. We were hoping that the roads would be somewhat cleared because the majority of the snow came early that night. But we didn't get that lucky. We ended up following this storm ALL THE WAY HOME!!!! And as soon as we hit Michigan, the storm, of course, was worse. We finally ended up getting home safe and sound which I am very appreciative for. That is all I can really ask after a trip like this! All in all, the trip was very informative. We start home infusion in early March so we can cut back on the trips to Omaha. We are still due in every 6 months which is a lot better than 4 times in 6 months. I will keep everyone posted!