On July 23 we flew to my parents home across the country to drop Madi off for a week and to have Ali blessed at a church which my grandparents have called their own for years.
We arrived after a long day of traveling feeling both relieved and surprised because after so many weeks of worrying and stressing over our journey, things had actually gone really well. In our minds we thought that Ali would have a very rough trip but both our girls showed that they’re made of good stuff by traveling like champs (PHEW)!
On Sunday July 24th we went to my Grandparents church and Ali received a beautiful blessing. She looked so pretty wearing the dress that Madi had worn for her baptism and my sister’s wedding. We were joined in the church by my mom and dad, my grandparents, my godparents and my aunt and uncle. We do a lot on our own here at home so it was amazing to have such family support! The only down side was a woman who pulled me aside and told me how large Ali’s head was. She informed me that I needed to have it checked because it could be dangerous. She was very condescending and she actually brough tear to my eyes. FYI lady, I know all about the head! After the blessing we all went back to my mom and dad’s house for lunch and both Madi and Ali had a wonderful time visiting with my family.
On Monday July 25th, we got up bright and early, said goodbye to our beautiful Madi and my parents. Jason, Ali and I headed to Chicago. It was a long day and it was really hot but we had a good trip and arrived 9 hours later at the Westin O’Hare in Rosemont, Illinois. Immediately upon entering the hotel we ran into several families with CS kids. We were invited to join them for dinner but declined because we had just arrived, Ali was exhausted and to be honest the invitation seemed a bit overwhelming! We headed out to TGI Fridays for a quick supper and while we were there Ali nodded for the first, second and third time! She wanted to look at Daddy, have a kiss and then look at Mommy again…three nods!
On Tuesday July 26th we spent the day as a family touring around a bit and doing some shopping, We went to an outlet mall and to Chicago’s Navy Pier. It was a nice day.
Wednesday July 27th was Ali’s opportunity to meet the specialists to be examined and to join the research groups. Ali did great! We didn’t get any big surprises. We found out that she’s doing really well! The doctors seemed very encouraged by what they saw. Eyesight is a huge issue for her, we knew that but we are now confident that her vision will mature and that she will have functional eyesight despite having poor vision right now. We also found out that our tiny little Ali is big for a child with CS and that she currently has no orthopaedic issues! The specialists were very encouraged by Ali’s fine motor skills and her attention span and they told us that she is going to do very well in the future! We were told what to watch out for in the future, were given some advice on what to try next or which specialists to add to our team , were told about some tests that she should be having in the near future (MRI, Auditory Brain Stem)and then we took our sweet baby out for supper feeling very good about things!!!
Thursday July 28th was family fun day. We didn’t think that the activities suited Ali that much so we spent the morning as a family, met the group for lunch and then went to the Lincoln Park Zoo in the afternoon. Ali loved the Zoo, she liked the flowers and looking at the animals. She was very cute!!!
Friday July 29th was our Costello specific day so it was a day of lectures about Costello Syndrome. We had to drop Ali off at daycare before going to the lectures and I hated that! It was so hard to leave her with strangers, she was less than impressed with the situation and it broke my heart! There were 12 lectures available, they ran 2 lectures per time slot and we had 6 time slots. Jason and I split up so that we could cover all the lectures. They were really interesting and we learned some great information. Friday night was the night of the Costello Syndrome family dance so we had dinner with the group and visited with everyone.
Saturday July 30th was another day of lectures and Ali had to go back to daycare again. The lectures were not Costello specific but some of the topics did apply to Ali. We attended the morning sessions but when we went to check on Ali at lunch time she was really upset so we decided not to take part in the afternoon sessions and instead we went to Target!
Sunday July 31st was wrap up day. The doctors held a panel where they summarized what they had learned and in which direction they wanted to go with their research. After the discussion we got into the car and headed downtown Chicago to walk the Magnifigant Mile. What an amazing city Chicago is!
So what did we get out of this conference?
1) We met lots of other families with young children dealing with Costello Syndrome. We exchanged ideas with them and talked a lot about what works for us and what doesn’t. When we came home we made some huge changes to the way we feed Ali in an attempt to minimize the spitting up and to help her develop and grow. At first the changes seemed to make a big difference in how much nutrition she was able to keep in her little body but over the past few days we’ve started to notice that she is slowly starting to spit up again so the jury is still out! We also got some ideas about programs available to help us make the transition to oral feeding from G-tube feeding. We are considering a “Tube Weaning” program based in Germany (by telephone/internet) and are thinking of starting that in the near future. We have now actually seen other children with Costello Syndrome!!!!!!! We will be staying in touch with these families and looking forward to having our children get to know their children at future meetings.
2) We signed Ali up for most of the research studies available. The reason we agreed to participate is because this way the information will be available to us as we need it. We opted out of anything that was painful however, we did do urine samples though and that was quite the exciting procedure! We have now had face to face conversations with most of the leading Costello Syndrome research professionals in the world and have really taken all of their advice to heart.
3) We learned about some really important tests that we need to push for Ali to have and about a couple of doctors that we need to add to her team.
4) We had a fabulous time in Chicago. We learned that we CAN travel with Ali! She was such a good girl. She was able to tolerate the intense heat and the bright sun while we were out and about, we had our doubts before going. She showed that deviating from her very well planned schedule is okay, she didn’t get sick which was what we thought might happen and I think she really enjoyed the stimulation! Getting her back on her schedule was fairly easy once we returned home and although she was very tired, she was happy and healthy and ready to hang out in at my parent home for a while.
5) We had intended to make an attempt to get to know some of the families with older children but to be honest we didn’t. I realized shortly after we arrived in Chicago that I was nowhere near ready to meet Ali’s future head on. The older children made me uncomfortable in a way because I still have trouble picturing Ali as a teenager or adult with Costello Syndrome. I think I need to transition to that way of thinking gradually. The older children were fascinated with the babies so Ali did have a fair amount of interaction with them and they were all kind and gentle when they played with her. We just sort of observed and watched them interact, that was the best we could do this time! Many of the adults are doing well in their lives. There are adults that live fairly independently and have very few health issues. That was great to hear! All of the children/adults are incredibly social and happy. It was amazing to see how similar they all are in some ways yet so different in other ways.
That kind of summarizes our time in Chicago. After leaving Chicago, Jason returned home and the girls and I spent two weeks with my parents. We are home now and trying to settle back into our usual routine! We look forward to having another opportunity to get together with our Costello Syndrome family in the future! Now that the trip is over we are taking some time of absorb and discuss what we have learned. I still don’t really know how I feel about it all. I guess that will be another post!
Thanks to all who supported us and helped to make this trip possible. It was everything we had hoped it would be!
