Last week we had the opportunity to head down to Atlanta, GA…with just Logan! A clinic specifically for Pitt Hopkins was organized by a fellow PTHS mom, and founder of the Pitt Hopkins Research Foundation. It was fantastic.
We had a little over a month to start planning…and stressing. We needed to bring all medical records, which sounds pretty easy. Well, Logan has more records and more doctor visits than I do. She really has racked them up! We decided to leave the boys with my parents, which is another stress. I’ve always been so worried about leaving anyone behind…the situations that play out in my mind are over the top, and anxiety sets in. Between the flu outbreak and the current affairs in the world, I was a mess inside. I pumped everyone with elderberry syrup and vitamins, and had my prayer warriors keeping us safe. Thanks, ladies 😉
It’s about a five and a half hour drive to GA, and Logan is the best car traveler! She is content with staring out the window, playing with some toys, or watching her favorite movies…Frozen and Inside Out. It is a big difference when her brothers are in the car. David and I could actually talk to each other without being summoned for something. Logie definitely enjoyed the silence as well 🙂
We arrived late Thursday afternoon, and were up bright and early for the clinic on Friday. In typical Logan fashion, she woke up at 2am and didn’t fall back to sleep until around 5:45. We had to be up by 6:15. Yay. Luckily she was safe in her Privacy Pop bed, so at least David and I could get some sleep while she was enjoying her night owl ways.
There were 6 specialists there: Neurology, Gastroenterology, Nutrition, Speech, Orthopedic, and Physical Therapy. Each family had 30 minutes with each doctor. It was like speed dating, ha! It was great. Each one cut right to the chase, gave honest opinions, and they each genuinely wanted to learn more about our kids. Most, if not all of them, have strong backgrounds with Rett Syndrome, which is similar to PTHS. Their experience with PTHS was limited, but I have no doubt that they quickly learn and will help so many of our kids.
We walked away with some great suggestions and strategies to help Logan excel in all areas. For me, it was just great to hear that we were doing exactly what she needed, and that she was healthy and looked great physically.
She will walk, she will be able to get up and down by herself…just at her own pace.
She will get better with her communication as long as we continue to give her the right tools and the time to absorb everything.
She will grow and gain as long as we continue to give her foods that help heal her gut (which helps with the brain).
We will continue to tackle her GI issues of gas and constipation with tools that she will not become dependent on.
We will continue to see as many specialists as we can, but most importantly, we will continue to learn from the real experts…the families.
These families. The best part of this trip was being able to finally meet some of them in person. It’s so strange. You develop these relationships with people online, they help guide you through these murky waters, and you may never meet them in person. David and I were so thrilled to spend time with these incredible parents and their amazing kids. We got to finally meet the woman who started it all, Audrey. Without her I don’t know where we would be, and I doubt any research would be going on. We are so grateful for her. Logan took to her very fast, and even gave her some of her coveted hugs 🙂 The Pauca family was there as well. They live close by, so we’ve been able to see them from time to time, but it’s always nice to be around them. And, we finally got to meet the super cool family who helped us with Logan’s bed!
There were several girls there around Logan’s age, which is something we have not been able to experience up until now. If you closed your eyes and listened, you wouldn’t know which one was Logan. Their sweet sounds of excitement sounded the same! I could tell that Logan was enjoying these little ladies. She kept smiling when they were around her. There were also a couple of older girls. Just watching them gave me great hope for Logan. It was nice to see where Logan might be in 6+ years. These young women were so beautiful! I swear, these kids have the best hair and lips I’ve ever seen!
We all went out to dinner that night, something that we rarely do as a family – and not because of Logan. Have I mentioned wild man before 😉 I cannot tell you how nice it was to be in a room with all of these people. Whenever we are in any kind of social situation it can be tricky and stressful. Imagine your toddler throwing a fit, and there is nothing you can do to calm them down. That feeling of panic sets in, and you think the entire world is watching and judging you. Well, that’s what it is like for us on a daily basis. Luckily my skin is pretty thick and I really don’t care if anyone is shaming from afar. Anyway, Logan does well with crowds most of the time, but we just never know. When she hits a low, it’s low, and when she hits a high…it’s high. Both resulting in loud sounds coming out of her tiny body. Most of the time she is pretty even, or at a high. This may have been the only time that I was not concerned about this. These people get it. They pass no judgement, they don’t give funny looks, and they step in if needed. I almost felt normal. We swapped stories, tips and tricks, and just enjoyed our new family. I’d give anything to not be in this situation, but I will always be grateful for these people. We simply could not survive without them. If you know any special needs families…get to know them. They have strength, wisdom and compassion you may never come across. And their typical kids are pretty outstanding.
The last highlight of our trip was seeing my best friend of almost 20 years. She recently moved to Atlanta with her husband and little girl, and we had not seen each other in forever! Our time was short, but treasured. It made me realize that I need to take time for myself and not feel guilty about needing a girls weekend.
We came home, and everyone here survived! The boys were in one piece, the grandparents (yes, both sets pitched in!) were still standing, and our backyard looked amazing! Thankful for warm February days and able bodies to do some much needed and appreciated yard work! Oh, and we had a pet snake for about 4 hours. Not sure if I’m thankful for that.
*I didn’t take many pictures, and I haven’t asked for approval from the parents yet of the few I did take. Hopefully they will be added.